Newly Diagnosed, Maybe.

I have been suffering from headaches and chronic dizziness for over a year now and have seen every doc imaginable. I have been to my Primary Care Doc more times than I can count, saw an ENT twice, had two MRIs, am in holistic chiropractic therapy, been in physical therapy, had a CT scan of my sinuses, a cervical MRI, saw an MS Neurologist, and my OBGYN. All tests are 'normal'. All tests done at the Mayo Clinic by Mayo Clinic Doctors.

This last trip to the ENT he said he believes I have migraines, and is sending me to a headache neurologist with the Mayo Clinic at month end.

Right now I hurt so bad. My eyes burn, my head hurts, I am dizzy. I am so sick of this. More days than not I feel like crap. I am off gluten, removed all artifical sweeteners and caffeine from my diet, exercise at least 3 days a week (weights and treadmill), take a magnesium, calcium and potassium supplement on the advise of my doctors. I have a regular sleep schedule, in bed at 9, up at 5, like clockwork. I don't even need an alarm.

ENT says the dizziness is migraine related. I am always dizzy, but don't always have a headache. Sometimes exercise helps, sometimes not. I find myself needing one or two naps a day. It's hard to concentrate on my work.

OBGYN changed, then took me off birth control pills, and now the headaches are worse. The one have today feels like the headache I used to get the week of my cycle that I was off my pills. As she lowered my dose my dizziness got worse. I am 48 and suffer hot flashes and night sweats when not on the pill.

My PCP wants to put me on Pamelor without a firm diagnosis. Says 'maybe this will help'. Maybe making my hubby give me a massage every night would help too, but we all know that's not going to happen Pamelor will make me tired and non functional. I work 10 hours a day on my computer doing work for a software company. I have to be functional, at least partially.

I am living on Sudafed, Ibuprofen and Tylenol, which most of the time do not work. Sometimes they take the symptoms down just enough so I can function.

Any comments, thoughts or suggestions would be appreciated. I cannot remember that last time I had a headache/dizzy free day.

Karen

I have chronic daily headaches and along with the constant headache, I had dizziness and a feeling of being off-balance.

I went to a Bowen Therapist and he realigned my tailbone and much of the dizziness and the feeling of being off balance went away. It also lowered, some of the headache pain.

I am now seeing a Myofascial Release (John Barnes type therapy) for the muscle problems that may be causing the headaches. She also says the same thing, the tailbone being out of alignment can cause the dizziness. She puts it back in line and she recommended that I buy a "Sarco-Wedgy" (Amazon sells them) to keep it aligned.

However, I think that the Bowen therapy technique is better for getting your tailbone aligned. Three short sessions usually does it. Here is a website for this type of thrapy:
http://www.bowendirectory.com/

You might also consider getting a "coccyx cushion" for your office chair, it will keep the tailbone properly aligned.

Again, what works for some, may not work for others.

Martin

Interesting, thanks for the reply, since I have noticed an ache in my tailbone over the past year, on and off, especially after getting of the treadmill. My chiropractor is performing neurocranial integration. Working the soft tissue, muscles and cranial bones. She has helped my upper back aches considerably. She also says that the lower back issues can reflect up to the upper back.

I will check out the cushion. I sit all day, and I make sure I get up every hour and walk around a bit. I still find myself leaning into my computer. I need to invent a big velcro strap to keep my back against my chair.

mxgo wrote:I have chronic daily headaches and along with the constant headache, I had dizziness and a feeling of being off-balance.

I went to a Bowen Therapist and he realigned my tailbone and much of the dizziness and the feeling of being off balance went away. It also lowered, some of the headache pain.

I am now seeing a Myofascial Release (John Barnes type therapy) for the muscle problems that may be causing the headaches. She also says the same thing, the tailbone being out of alignment can cause the dizziness. She puts it back in line and she recommended that I buy a "Sarco-Wedgy" (Amazon sells them) to keep it aligned.

However, I think that the Bowen therapy technique is better for getting your tailbone aligned. Three short sessions usually does it. Here is a website for this type of thrapy:
http://www.bowendirectory.com/

You might also consider getting a "coccyx cushion" for your office chair, it will keep the tailbone properly aligned.

Again, what works for some, may not work for others.

Martin

My daughter has what her doc called vertiginous migraines.........dizziness is her major symptom. She takes a small dose of elavil as a preventative which does seem to cut down on their frequency. Do you have a history of migraine in your family? Migraine is usually a rule-out diagnosis and it does seem that you have been through a lot of tests however I was wondering if you have seen a neuro-opthamologist? They can rule out issues with your inner ear that could be causing the dizziness. Just a thought. L

You could be getting migraines associated with hormones being out of whack from perimenopause. I started getting pretty much daily headaches at 46, without ever having had a problem before.

While I did not find any preventatives that helped, I did find supplements greatly improved the situation. 400 mg magnesium, 5000 mg vitamin D, 200 mg bio identical progesterone. This took me down to only about 20% migraines. Something to look into.

I take 5 mg oxycodone with Frova for pain relief. Works alot better than OTC drugs which do nothing for migraine.

I did all the inner ear/vestibular testing at the Mayo Clinic and passed with flying colors. My mother has/had migraines. Was your daughter having dizziness without headache? I am dizzy 24/7 but don't necessarily always have a headache, although I usually have some sort of level of headache every day.

Karen

Jewishmother wrote:My daughter has what her doc called vertiginous migraines.........dizziness is her major symptom. She takes a small dose of elavil as a preventative which does seem to cut down on their frequency. Do you have a history of migraine in your family? Migraine is usually a rule-out diagnosis and it does seem that you have been through a lot of tests however I was wondering if you have seen a neuro-opthamologist? They can rule out issues with your inner ear that could be causing the dizziness. Just a thought. L

My thought is hormones also, since the last 3 days are the exact headache I used to get being off my pills for the weekly cycle. Now I am off altogether and it has been 6 days since my last pill, which is the same timing as before. I am hoping today will be better as my body settles down and accepts the fact that I am no longer feeding it estrogen.

I am taking 200 mg of magnesium now, wondering if I should bump it. I am going to make an appt here in AZ with a practice that specializes in hormone therapy. It's kind of obvious to me that at least some of this is hormonal, since many of the really bad headaches coincide with my cycle and the hot flashes I have every night.

My PCP wants to put me on Pamelor, which I do not want to take because of the bad side effects I have been reading about. There has to be something better out there. Nothing I take at this point is helping with the dizziness, and actually the dizziness has become more chronic since they changed my BC pill from 35 mcg down to 10 mcg and then down to nothing at all.

Karen

Migrainegirl wrote:You could be getting migraines associated with hormones being out of whack from perimenopause. I started getting pretty much daily headaches at 46, without ever having had a problem before.

While I did not find any preventatives that helped, I did find supplements greatly improved the situation. 400 mg magnesium, 5000 mg vitamin D, 200 mg bio identical progesterone. This took me down to only about 20% migraines. Something to look into.

I take 5 mg oxycodone with Frova for pain relief. Works alot better than OTC drugs which do nothing for migraine.

It does sound to me like you are having migraines. Especially when you said that you used to get them the week you were off your pills. Many, many of us get hormonal migraines, and for a lot of us, they're pretty hard to treat. I am a weird one, I guess. My gyn tried giving me the pill to help with my terrible PMS symptoms and painful periods. My headaches got worse, and my blood pressure went up.

I'm not familiar with the medication your doctor wants you to try. As much as you are suffering, I'd ask to try a preventive. Lots of people have success with a reduction in frequency and severity of their attacks. You can't go by the rest of us. We tend to be the hard to treat cases, it seems. There are many different medications that can be used as preventives. Personally, I'm on a combination of amitryptline and propranolol. I still have plenty of migraines, but they're not as bad as they are when I'm not taking them.

Karen, please let us know how it goes with the hormone doctor. I have been considering doing the same.

I will keep you posted. I am on day 4 of my headache, although today it's not as bad as it's been the previous 3 days. Perhaps my body is finally adjusting to the diminished estrogen. At least I hope. I am sick of this.

I wish I could get a definitive answer on why I am perpetually dizzy. I have been up and down every avenue but can't find the end of the street. My next step is to test my air handling system at home for molds. I am pretty sure that's not the problem, but it never hurts to check.

In the meantime, two ibuprofen every 6 hours keeps me semi-functional for the most part. Just enough that I can at least work.

Migrainegirl wrote:Karen, please let us know how it goes with the hormone doctor. I have been considering doing the same.

Amitryptline was one of the medications they suggested also. I looked at the side effects. Seems silly to treat headaches and dizziness with a medication that causes headaches and dizziness Pamelor = Nortrptyline.

Brenda wrote:It does sound to me like you are having migraines. Especially when you said that you used to get them the week you were off your pills. Many, many of us get hormonal migraines, and for a lot of us, they're pretty hard to treat. I am a weird one, I guess. My gyn tried giving me the pill to help with my terrible PMS symptoms and painful periods. My headaches got worse, and my blood pressure went up.

I'm not familiar with the medication your doctor wants you to try. As much as you are suffering, I'd ask to try a preventive. Lots of people have success with a reduction in frequency and severity of their attacks. You can't go by the rest of us. We tend to be the hard to treat cases, it seems. There are many different medications that can be used as preventives. Personally, I'm on a combination of amitryptline and propranolol. I still have plenty of migraines, but they're not as bad as they are when I'm not taking them.

Have been to an ENT? Good to make sure there is not some inner ear imbalance causing dizziness. Also some meds can do that.

One of the first things they checked.(I have been to the ENT twice now). I went through a vast array of nasal scoping and vestibular testing and some vestibular rehab, even though all tests came back perfectly fine. The first Mayo Clinic neuro doc shrugged is shoulders and said it might me an inner ear imbalance my brain never got used to. I do take a single sudafed with my ibuprofen because sometimes that also seems to tone things down ever so slightly. It could be my imagination. Any more than 1 - 2x per day and I start to get side effects.

Also hit the allergist for food and environmental allergies. Found out I was allergic to many of the veggies I was eating, which were definitely causing some of my headaches - those were different headaches. Funny, since I stopped those foods, I have had no nasal problems at all. I used to be so bad with sneezing, runny nose, itchy nose, etc. I have not needed any nasal allergy meds since then. I am seriously considering going for chemical allergy testing. It's covered under my insurance and I found that I cannot use antiperspirants with aluminum. I had a rash and swollen lymph nodes for a year before I figured that one out on my own. Even the dermatologist did not put two and two together.

My symptoms have changed over the past year and 1/2, from where the headaches are located to the dizziness getting worse. The side of my face gets 'numb' in front of my ear along my cheek. Kind of like the tail end of Novocaine. I get all kinds of buzzing and what I call inner twitching all over too, in my legs, arms, shoulders. Other women have said the buzzing is menopausal. I also get numbness in my lower left leg and sometimes in my left arm. No one knows why. ENT said the dizziness is migraine. Seems hard to believe that could be a 24/7 cause of dizziness.

Glad I found you guys to share.

Migrainegirl wrote:Have been to an ENT? Good to make sure there is not some inner ear imbalance causing dizziness. Also some meds can do that.

Almost all medications have a chance of causing things like headache and dizziness. It doesn't mean that it happens often. It simply means that when the medication was in the testing phase. At least one person had a headache or was dizzy. Often they don't cause any side effects, or the side effects are mild or go away after your body adjusts to the medication. I take the two medications together to counteract the side effects. The Amitryptline made my heart race, but helped with the frequency of my migraines, so he put me back on Propranolol with it because it helped the migraines some, and settled down the heart issues.

I'd really suggest you give preventives a try. What do you have to lose at this point? That's just my opinion, of course. It really comes down to deciding if side effects are worth the benefit to you or not. You and your doctor will have to decide that together.

I hope you find something to work for you.

Saw the Mayo Clinic Headache Neurologist yesterday. He feels this is also migraine, but is sending me for more tests to confirm there is nothing else going on. I will be having an MRA and and another MRI to check the veins and arteries in my head to make sure there are no aneurysms or blockages causing the dizziness. Scary thought. His course of action if the tests are fine is Pamelor. My chiropractor insists I look into hormone therapy, which she did and which helped her immensely.

If the tests on Monday come back normal, then I plan a course of action to control the dizziness which he feels is migraine, even though it is 24/7. He also felt this was perimenopause related. Told me that 75% of women have no problems after menopause. He said I will feel worse being off my birth control pills, which I stopped about 3 weeks ago. He is right - I am feeling worse than ever in this past 3 weeks and the past 2 months since they reduced my estrogen and then took me off completely.

Today I see my OBGYN to consult with her for her opinion also. Of course now my anxiety has taken control

Karen

mafixit wrote:I have been suffering from headaches and chronic dizziness for over a year now and have seen every doc imaginable. I have been to my Primary Care Doc more times than I can count, saw an ENT twice, had two MRIs, am in holistic chiropractic therapy, been in physical therapy, had a CT scan of my sinuses, a cervical MRI, saw an MS Neurologist, and my OBGYN. All tests are 'normal'. All tests done at the Mayo Clinic by Mayo Clinic Doctors.

This last trip to the ENT he said he believes I have migraines, and is sending me to a headache neurologist with the Mayo Clinic at month end.

Right now I hurt so bad. My eyes burn, my head hurts, I am dizzy. I am so sick of this. More days than not I feel like crap. I am off gluten, removed all artifical sweeteners and caffeine from my diet, exercise at least 3 days a week (weights and treadmill), take a magnesium, calcium and potassium supplement on the advise of my doctors. I have a regular sleep schedule, in bed at 9, up at 5, like clockwork. I don't even need an alarm.

ENT says the dizziness is migraine related. I am always dizzy, but don't always have a headache. Sometimes exercise helps, sometimes not. I find myself needing one or two naps a day. It's hard to concentrate on my work.

OBGYN changed, then took me off birth control pills, and now the headaches are worse. The one have today feels like the headache I used to get the week of my cycle that I was off my pills. As she lowered my dose my dizziness got worse. I am 48 and suffer hot flashes and night sweats when not on the pill.

My PCP wants to put me on Pamelor without a firm diagnosis. Says 'maybe this will help'. Maybe making my hubby give me a massage every night would help too, but we all know that's not going to happen Pamelor will make me tired and non functional. I work 10 hours a day on my computer doing work for a software company. I have to be functional, at least partially.

I am living on Sudafed, Ibuprofen and Tylenol, which most of the time do not work. Sometimes they take the symptoms down just enough so I can function.

Any comments, thoughts or suggestions would be appreciated. I cannot remember that last time I had a headache/dizzy free day.

Karen

My issues are related to perimenopause also.
Too much progesterone can definitely make you dizzy.
Getting the hormone analysis is a good idea.

Good luck!

Went to see my OBGYN today. Ovaries are killing me since I have been off my pills (for 3 weeks) for the first time in 30+ years. This was one of the reasons I stayed on BC pills. I could tell you the day I was ovulating because it hurt so bad. Now it feels like those little guys are spitting out eggs like a Gatling gun. She is testing my hormone levels, Thyroid, etc. They drew blood today. Then later today I had a knock down dizzy spell.

Saw the Headache Neurologist yesterday. He is said 'migraine' - dizziness and the pressure I feel is a migraine without headache - most likely caused by hormones - but is sending me for scans of the veins and arteries in my brain to make sure there are no aneurysms or blockages, just to be sure.

He also suffers from migraines and also suggested Pamelor, a drug he successfully used. But he wants to wait for the test results. Monday is the big day. I will post results.

Karen

Migrainegirl wrote:My issues are related to perimenopause also.
Too much progesterone can definitely make you dizzy.
Getting the hormone analysis is a good idea.

Good luck!

Test results are back. MRA and MRV are both normal. Great news. Exercise and proper diet are keeping my veins and arteries healthy. Plan of attack is now migraines and hormonal issues. I am making an appointment to see a hormone specialist out here - I believe he is also a naturopath (sp?) recommended by my chiropractor, who used their practice with great success. All I know is every since I was removed from my birth control pills - I feel worse. Coincidence? I am thinking not. Now I am also getting what I think are vertigo episodes followed by what is most likely a dull migraine headache with dizziness.

mafixit wrote:Saw the Mayo Clinic Headache Neurologist yesterday. He feels this is also migraine, but is sending me for more tests to confirm there is nothing else going on. I will be having an MRA and and another MRI to check the veins and arteries in my head to make sure there are no aneurysms or blockages causing the dizziness. Scary thought. His course of action if the tests are fine is Pamelor. My chiropractor insists I look into hormone therapy, which she did and which helped her immensely.

If the tests on Monday come back normal, then I plan a course of action to control the dizziness which he feels is migraine, even though it is 24/7. He also felt this was perimenopause related. Told me that 75% of women have no problems after menopause. He said I will feel worse being off my birth control pills, which I stopped about 3 weeks ago. He is right - I am feeling worse than ever in this past 3 weeks and the past 2 months since they reduced my estrogen and then took me off completely.

Today I see my OBGYN to consult with her for her opinion also. Of course now my anxiety has taken control

Karen

mafixit wrote:I have been suffering from headaches and chronic dizziness for over a year now and have seen every doc imaginable. I have been to my Primary Care Doc more times than I can count, saw an ENT twice, had two MRIs, am in holistic chiropractic therapy, been in physical therapy, had a CT scan of my sinuses, a cervical MRI, saw an MS Neurologist, and my OBGYN. All tests are 'normal'. All tests done at the Mayo Clinic by Mayo Clinic Doctors.

This last trip to the ENT he said he believes I have migraines, and is sending me to a headache neurologist with the Mayo Clinic at month end.

Right now I hurt so bad. My eyes burn, my head hurts, I am dizzy. I am so sick of this. More days than not I feel like crap. I am off gluten, removed all artifical sweeteners and caffeine from my diet, exercise at least 3 days a week (weights and treadmill), take a magnesium, calcium and potassium supplement on the advise of my doctors. I have a regular sleep schedule, in bed at 9, up at 5, like clockwork. I don't even need an alarm.

ENT says the dizziness is migraine related. I am always dizzy, but don't always have a headache. Sometimes exercise helps, sometimes not. I find myself needing one or two naps a day. It's hard to concentrate on my work.

OBGYN changed, then took me off birth control pills, and now the headaches are worse. The one have today feels like the headache I used to get the week of my cycle that I was off my pills. As she lowered my dose my dizziness got worse. I am 48 and suffer hot flashes and night sweats when not on the pill.

My PCP wants to put me on Pamelor without a firm diagnosis. Says 'maybe this will help'. Maybe making my hubby give me a massage every night would help too, but we all know that's not going to happen Pamelor will make me tired and non functional. I work 10 hours a day on my computer doing work for a software company. I have to be functional, at least partially.

I am living on Sudafed, Ibuprofen and Tylenol, which most of the time do not work. Sometimes they take the symptoms down just enough so I can function.

Any comments, thoughts or suggestions would be appreciated. I cannot remember that last time I had a headache/dizzy free day.

Karen

Please keep us posted on the hormone treatment. I'm trying to decide if I need to do more than the progesterone I'm on now, or if it will go away with menopause. It's now been over two weeks since my last migraine ( despite a major flu and really messing up my lower back - so lots of things likely to bring on a migraine.). All I can do is hope still.

Are you attributing your relief to the progesterone?

Karen

Migrainegirl wrote:Please keep us posted on the hormone treatment. I'm trying to decide if I need to do more than the progesterone I'm on now, or if it will go away with menopause. It's now been over two weeks since my last migraine ( despite a major flu and really messing up my lower back - so lots of things likely to bring on a migraine.). All I can do is hope still.

Yes, I had tried all the preventatives, with no relief and many very bad side effects.
I also had been through cervical injections, chiropractic, botox, massage and acupuncture with out getting any better. I stayed at around 80% headache days for about 3 years.

Finally in desperation I tried a plan that combines 200 mg bio-identical progesterone (very important it is not synthetic) with 400 mg magnesium, 5000 mg vitamin D, and 12.5 mg iodide. I went down to only 20% headache days per month. Severity is also less. I have few really bad days, most are 2-4 on the pain scale The effects were almost immediate. I saw significant improvement in the first week. I have been on this program for 3 years now. While I see some periods as long as 2-3 weeks without headaches, some months are worse than others. Particularly If I have to fly alot.

So not a perfect cure, but a significant improvement in terms of quaily of life. I've been able to keep working. The difference between 80% and 20% headache days is HUGE.

Blood work from my OBGYN says 'perimenopausal". She says my estradiol was still high, still coming down from the BC pills. Found out today I am also blessed with an ovarian cyst or two. Happy days. That explains the dull ache in my lower back and the fact that it felt like my ovaries were dancing a jig after I stopped my pills a few weeks ago.

I am glad to hear you have found relief. It really gives me hope. What I would give to have a two week period without dizziness and headaches.

So OB says 'perimenopausal'. Headache specialist says 'migraines from perimenopause'. My next trip to the hormonal specialist is completely justified, don't you think? Maybe the path is finally narrowing after all the searching for an answer.

Karen

Migrainegirl wrote:Yes, I had tried all the preventatives, with no relief and many very bad side effects.
I also had been through cervical injections, chiropractic, botox, massage and acupuncture with out getting any better. I stayed at around 80% headache days for about 3 years.

Finally in desperation I tried a plan that combines 200 mg bio-identical progesterone (very important it is not synthetic) with 400 mg magnesium, 5000 mg vitamin D, and 12.5 mg iodide. I went down to only 20% headache days per month. Severity is also less. I have few really bad days, most are 2-4 on the pain scale The effects were almost immediate. I saw significant improvement in the first week. I have been on this program for 3 years now. While I see some periods as long as 2-3 weeks without headaches, some months are worse than others. Particularly If I have to fly alot.

So not a perfect cure, but a significant improvement in terms of quaily of life. I've been able to keep working. The difference between 80% and 20% headache days is HUGE.

Karen, it's darn sure worth a try. Good luck!

Talked to my Mayo Clinic Headache Neurologist today. He suggests Pamelor (Nortryptyline), starting at 10 mg and working up. He says he has prescribed it 100's of times and was on it himself (he has migraines) for 9 years. It is his number one recommendation. He also said I can try Verapamil (his second choice) if I want instead of the Pamelor. The difference is the Verapamil will not help with anxiety, which is a big problem for me at this point, and I think the Verapamil will have less side effects.

He also was not at all opposed to HRT. He said he would do both, even though it is very hard to regulate our hormones. I have an appointment with Soto Pelle.

At this point I think I will take his advice and fill a prescription. I can't continue to live like this. I just can't decide which to try - the Verapamil or the Nortryptyline. I'll decide over the weekend. Drugs in general scare me.

Karen

Good luck. Neither did anything for my migraines, but individual mileage will vary.