To treat or not to treat- that is the question

Hi All,

Right now, I feel stuck between a rock and a hard place. The headache has been really bad and so I broke down and took some klonopin and t3 (in addition to the ultram) to see if that would help. It has helped.

I know it makes me a little out of it, though.

Today, I went to see Mom and pick up Max for a walk. After the walk, Mom kept asking if I was ok. I told her that the headache was bad, as was the fainting. I told her that I had taken some klonopin and she replied "Well, that's it. I knew there was something really wrong." I told her that the headache was so bad that I didn't know what else to do. She shrugged and basically said "well, don't take the klonopin."

I really hate this. If I treat the headache, it feels like I have to justify it to others. Also, she is basically blaming the problem on the meds again. How many times do I have to prove that the medication- a. helps the headaches and b. doesn't cause the fainting.

the whole situation really frustrates me. The cardiac drs always seem to say the medication is the cause of the fainting, but it isn't. (I have gotten off all medications several times since the fainting began and there was no difference in the fainting.) Also, I have noticed that the fainting gets worse when the pain gets worse. So, in the midst of this one, I find myself frustrated and scared again.

I think the only thing to do is to treat the headache so I can possibly avoid an IV. All I have to do tomorrow is go to training and do some cleaning. I hope I can just sort of chill tomorrow. I think the only thing to do is to rest and treat this one. I am hoping it will improve.

Thanks for letting me vent.

Pain free days,
sailing

I am sorry but I haven't read your history but have you ever had a tilt table test? Or have your doctors performed a "poor mans tilt"? Where you lie down and after a few minutes your pulse and blood pressure is taken. Then you sit up and same vitals are taken. Then you stand and vitals are taken immediately then after 3rd, 5th, 7th and 10th minutes.

When my daughter was diagnosed with vasovagal, her cardiologist said they did not want to put her through the tilt table testing because it would make her feel too bad. I wish the doctor would have performed the test, because 6 months later she became very I'll and was eventual diagnosed with POTS.

The tests can tell if you have any orthostatic intolerance problems. Can you PM me and let me know what you have been dealing with? I will try to help. I totally understand about the anti medicine thing - my husband and his family are like that. Luckily I have medical professionals in my side so I have had support.

Hang in there. I still take meds but have resorted to nerve blocks - they work much better for me and less side effects.

If I were you, I'd treat them when you think it's appropriate; and just don't discuss your medication use with your Mom. I know it's not fun to have to hide things, but she obviously doesn't understand the agony you deal with, or she wouldn't give you "the look." Just my opinion. That and $5 will get you a small coffee at Starbucks. lol

SM,

You have certainly been through the ringer. It's clear that the CC advice to go off of everything did not work. And they were not very helpful to boot. Keep looking and don't feel guilty for needing to take the meds. It's obviously not helping you to avoid them. Get the IV if you need it. I kind of agree about mom. She may mean well, but the guilt trip doesn't help any.

I'm of the opinion if that:
-something helps (seems true)
-it has been ruled out that it isn't hurting (definitely true)
-its not something ridiculous or dangerous (such as taking meds that are incompatible with something you were trying to do, such as working, driving, taking care of a child...very likely true...you aren't taking it daily and you've shown you didn't become addicted)
-there hasn't been shown a better option with numerous doctor consults (definitely true)
-you have some sort of support, even if the majority or the person closest to you doesn't support you (true if you have a doctor prescribing it)

...I'd go for it. Its your life.

She isn't saying that you are dangerous, or providing a true reason not to use the meds (whether its Klonopin or something else)...her only evidence was that something seemed off. Small price to pay if it helps. Its rare to find something like that and I don't see you having a better option right now. Have you had that heart to heart conversation asking what better option does she have? I know there have been times that if I hadn't had something to take no matter how little it helped I would be scared that I'd be going into a depression or worse.

Even if by someone's opinion you were "high", if you are in your own house and it helps more than it hurts, what is the problem? I've never had that though...but have had those few meds which make me a bit not myself (but not anything bad such as drunk seeming, hostile, etc). You're not even talking about using this around the clock. Ask her what here concerns truly are.

Is she seeing something in your eyes that makes her think you are high? You've taken the issue off the table with the meds making the fainting or headaches worse. You didn't become addicted. I don't even seem to remember you having an issue with physical dependence (not like that is even a problem). Not to say you should hide it, but knowing what she is seeing can help. Or, maybe its just mother's intuition? I wonder if she picked up more on that you were in pain than the actual med...and once you told her she blamed it? I'm surprised with her being a doctor she is so against occasional use of any med that helps you. There are far worse things out there.

If it were me I'd also consider going back on long acting pain meds. Not sure why besides some doctors and your parents pushing for it to rule out them causing fainting, etc, that you went off of them. At the very least, get something without the Tylenol. 5mg Oxycodone is considered stronger than Tylenol #3, but for me I actually did really well on Tylenol #3 for a long time. They do make codeine without Tylenol too, but when you consider a higher dose than the Tylenol #3 its usually more appropriate to go to a different med (it converts to morphine in the system anyways, and the Tylenol #3 can be more constipating among other things).

Hang in there! Best wishes.

Hi All,

Thanks so much for the replies.

Mom- I know she notices some subtle changes in my personality when I take Klonopin. She doesn't think I am "high", but I do tend to speak more freely or ramble. I also try not to be around her if I do have to take it. I have never abused it. Due to her back problems, she has had to take similar medications in the past- and she hated the way they made her feel. I think this colors her judgement. I am not completely sure what her problem is. I have never absed medication or anything. I also think her opinion is colored by the fact that most of the cardiologists I have seen for fainting begin by blaming the meds.

I basically decided that I had to tcreat this one or I would go crrazy. I am trreating it with Klonopin, benedryl, ultram and T3. I have thought about going back to the pure opiates, but they don't seem to help as much. Though I am going to ask my pain dr if there is a pure form of codeine I could take so I wouldn't have to take so much tylenol.

I am also going to call about an IV of Depakan- hopefully I can get that done sometime this week.

The fainting has been horrendous. I did call the dr at the Cleveland Clinic yesterday, but all they said was that I should go to the ER. (The ER here can't really do a great deal for the kind of fainting I have- basically, they would
given IV fluids, done an EKG, and possibly helped the headache. Since most arrhythmias have been ruled out, there isn't anything that they could have done.) I did send the information from the loop recorder to Cleveland though, but to be honest, I don't believe that they can or want to deal with this problem. So, I am back to square one.

No one knows what to do. I am trying to get in with a new neurologist at the Universityhere hospital near here for another opinion. One more can't hurt and if he is able to help-great.

Anyway, thankks for letting me vent and backing me up.

Pain free days,
sailingm

Sailing muffin-

Have you had autonomic testing? Please look on the dinet.org site and ndrf.org site regarding autonomic doctors there are some good ones at Cleveland Clinic. The Chelimskeys used to be located at Cleveland Clinic and are excellent docs, but they recently relocated to run the autonomic facility at the University of Wisconsin at Madison. It sounds like the doctors have not done enough to get a handle on your fainting. Usually there is an underlying reason. Unfortunately, we have to search to find educated doctors.

Have you read any of the articles br Dr. Blair Grubb on syncope? He is one of the experts in the field and may give you some needed answers. Dr. Grubb is located in Toledo, Ohio.

I also hope that you can find a neurologist that is a board certified headache specialist. There is
a huge difference between a neurologist who treats headaches and a board certified headache specialist. Both of my daughters see board certified headache specialist. Both doctors are fantastic. My neurologist is not a headache specialist. (but I have always liked him). I am finally switching because I ended up diagnosing myself with POTS (only after my daughter was
diagnosed) and EDS.

Do not give up. Studies show doctors misdiagnose 40% of the time. (my oldest sister is a pulmonary doctor. I used to tell her about how i bruised so easily and my bruises lasted forever. My sister told me that bruising was the most common complaint of patients and she blew me off. As it turns out, my bruising is one of the indicators of EDS and a clotting disorder that I have) so, Keep searching for an answer that makes you better.

Hi All,

Thanks so much for the support, advice, and replies.

Mom: I am sure she thinks one reason I am spacey is due to the Klonopin, but it also happens with migraines. I think it probably easier for her to blame the medicine because she doesn't know what to do at this point. In additionl, most of the drs I have seen for fainting have said that the klonopin could be contributing. I got off all medication and still fainted the same amount. I also think that is coloring her judgement- she had no problems with it when it was strictly given for headaches.

POTS- Yes, I have had plenty of Autonomic testing- tilt table, blood volunem holter monitor. The tilt was faintly positive. I have actually seen Dr. Grubb for the fainting. However, it was always hard to get in touch with him. I went to the cleveland clinic in November and had some of the dysautonomia/POTS system, but due to the fact that the bp diidn't fall enough, they did not diagnose it as POTS. The best they have come up with it "something weird."

Personally, I think a bad flu must have damaged the vagal nerve or messed up the signal. The contant fainting began right after that flu. I now faint orr fall anywhere from Five to 15 times a day (the current record is sixty-two in 24 hours.) Cleveland has not been helpful at all. The last time I called the neuro I saw there, I was told "Don't ever call us back." When I tried the cardiolist office- after fainting numerous times, they said, "Well, you need to go the ER and have an EKG and bloodwork. I know from experience that there isn't a whole lot the ER can do about this, except give IV fluids. I also have a loop recorder in my chest and sent thouse in, at which point I was told= well, the doctor can't help you.

I know that something is going on, though. My dog picks up on it a minute oor two before I fall. He actually backs away so that I do not fall on him, but comes back once I am down and helps me up. I am on the waiting list for a service dog. When I went to visit both the seizure alert dogs and cardiac dog responded and alerted to the fainting even before I knew it would happpen. So I kind of wonder if a. someone is missing something or b. something is wrong, but we don't have the technology to pick upp on it.

Anyway, the pain is getting bad again.

Pain free days,
sailingm

I am so sorry Dr. Grubb has been difficult to get in touch with. I have heard he has been inundated with patients. It's weird the Cleveland docs said your POTS related to blood pressure - usually the diagnostic criteria is. A 30+ increase in your pulse upon standing. Can you get another appointment with Grubb or his nurse practionner?

If you stay super hydrated (even needing iv's) does that help your migraines and fainting?

I have been through a lot of fainting issues with my daughter so please PM me if I could help in any way. I just had nerve blocks on occipitaln trigeminal, and ocular nerve - a vast improvement from a constant "9" headache. Botox is also an option. It did not work on my daughter but has helped many people.

Also, my younger daughter has been treated by a PHD physical therapist. His specialty is the
neck and how the neck affects the head. I can find out if there are any like him in your area.
This doctor/PT discovered an indention in my daughter's C2 that was significantly affecting her migraines. The MRI did not detect the problem.

Hang in there! Big hugs

Trish