Headache Clinics & giving up preventatives

This may be overly emotional. I'm sorry, I'm at a breaking point. I just got done sobbing in my husband's arms. I have to hide away in the computer room now because it was upsetting my son.

I don't know what to do. My neuro has pretty much given up and wants me to go to a Headache Clinic in either Chicago or St. Louis. I haven't researched it yet, but prior posts and limited research I've done in the past doesn't sound to promising. Does anyone have experience at Clinic in either of these places? He also wants me to try Zonegran.

Today is the one year anniversary of me getting released from the locked psych ward. Why was I there? Side effects from Topamax had me mis-diagnosed as Bi-Polar. I was put on so many med's that at the time I was locked up I was eight daily med's, four of which were anti-psychotics. And no one ever took me off the Topamax!! I lost two years of my life. (my neuro told me I was the second of his patients to be diagnosed as Bi-Polar after starting Topamax)

I just looked up Zonegran. I am not willing to subject myself to the potential side effects. I can't do it anymore. Hubby, son and best-friend don't want me to either. They are scared to death I'll turn into the walking zombie of a year ago. So am I.

I've had migraines since I was a teenager. My mother and grandmother had them also. The older I'm getting the worse they're getting. Today my neuro told me they should getting better instead of worse. Oookkkayy.

I'll try to list what I've tried over the years. It's hard to remember.

Elavil
Cymbalta
Inderal
Keppra
Butterbur
Topamax
Depakote
Botox
Namenda
Migranal
Triptans (years ago I was in the study for Imitrex. That's how long I've been fighting this)

Oh Lordy, I know there's so many more, I just can't remember, my head is pounding.

At this point I just want pain management. Tomorrow when I'm on a faster connection I'm going to look for a neuro with a specialty in pain management. I will go to Chicago or St. Louis or Indianapolis if I need to. Please send me a PM if you have any Dr's you can suggest.

I need to go, I just can't stop crying.

Thank you, thank you for being here.

Charlotte

Cheryl, thank you for your kind response. It's made me somewhat hopeful.

Charlotte

Howdy

tough place you are in - crying is good for the soul. Go for it.

I do not Lyrica nor Neurontin on your list. Perhaps those preventatives would help you - I swear by Lyrica.

Get yourself a Board Certified Pain Manager. He does have to be a neurologist - you already have one of those. If you need help finding one, message me and I will do some research for your locale.

I tried Zonegram - the side effects were not bad with me. but neither did it help me at all.

Best of luck - hug that hubby of yours - he sounds like a keeper! I just love it when I hear of supportive spouses.

EDIT: Let me add a hearty "good luck" to picking up the pieces. Be persistent and I'm sure you will find improvements.

I can certainly understand your reluctance, but you have to understand that that problem WILL NOT BE REPEATED. You now know that IF SOMETHING WEIRD HAPPENS, IT'S THE DRUG'S FAULT. Seriously, you could not forget this if you tried. And if the drug makes you forget, your husband won't! Try the Zonegran like you are sneaking up on a rattlesnake. Work the dose up slowly, and you folks keep asking yourselves if things are getting better or not. If your life doesn't get better for taking it, crank the dose back down as fast as you dare. Working out a written plan with your husband might make you feel more confident. Run down the checklist once a week and see if your mind is working badly.

Have a good malpractice lawyer take those psych bastards to the cleaners. Locking you up and keeping you on Topamax was medical malpractice. First of all, your doctors had a legal duty to understand all the drugs they administered, which means they had to have read the official government-approved instructions for each of them. They are personally responsible for every pill on a locked ward, even if some other doctor first prescribed it. The Topamax instructions clearly list a huge incidence of mental effects (20% I think), which is a giant red flag for new-onset mental disturbances. Topamax is also famous for making people crazy, but that's harder to talk up in court. Topamax is also an epilepsy drug, which are well known to sometimes cause seizures instead of preventing them, and seizures can cause strange behavior.

P.S. If you got tardive diskinesia from the antipsychotics, that is described to a jury as "permanent brain damage".

Big hugs Charlotte. I hope all your medical notes have the fact that this was a drug s/e documented well. It seems so negligent that they left you on topiramate all that time

Zonegran is similar to topiramate, so if you do try it make sure you and your family keep an eye on things. I agree with Con on this. It's the drug I will possibly try next, when not pregnant or breastfeeding, so will be some time yet. But if you haven't tried gabapentin I'd try that first as Richard suggests.

Every few moths I have to have a good cry. It's very therapuetic apart from triggering a bad migraine (irony). I hope you're feeling a bit better now and I wish there was more I could do to help.

Amy

I'm sorry your feeling blue Charlotte. I understand your concerns, I would feel the same way.

I agree with Con, man, he stole everything out of my mouth and said it better too! Good going Con!!! Eloquent post.

I'm sure knowing what happened before between us and your family, we will all keep a special eye out to prevent it from happening again.

Hope you are feeling better.

Just a clarification. I was not on the Topamax when I was in the pysch. ward. I had switched pyschitrists and the new pyschatrist was the one who admitted me when he saw all the med's I was on. He was horrified. The reason he admitted me was he wanted me off ALL the medications immediately, cold turkey. He wanted me monitored for suicide and seizures. He has since released me from his care completely.

I just did a side-by-side comparison of Topamax and Zonegran. Zonegran has a higher incidence of confusion, difficulty w/ memory, and in addition to those agitation, depression, insomnia, anxiety, nervousness, speech abnormalities and difficult in verbal expression. I am SO not going there!!!!!

The side effects of neurotin and Lyrica seem much more doable. I think that will be my next choice.

Thank you so much folks, I'm much calmer today.

Charlotte

Howdy Charlotte

Remember that all drugs have side effects BUT, and this is absolutely critical to remember, the side effects are NOT probable, NOT likely ... only possible. It is a real cover your backside for the companies to list all possible side effects. check out the possible side effects for Aspirin sometime.

The ONLY way you or I will ever know if a medication for prevention will HELP us or have negative side effects is to actually try the medication.

The GREAT NEWS, is that we migrainers come from hardy stock - each and every one of us. We are a VERY strong tribe of humans. Lesser mortals would have fallen by the wayside long before they ever got where we are on the migraine highway.

So be of good heart, strong courage, and trust your physician. If you do not trust the treatment your physician is ordering for you, then by all means, change physicians! TRUST is the primary, neccessary and most important quality in the doctor-patient relationship. No trust = no relationship and time to move on.

My best to you ... and remember to love that man of yours! He really loves you a great deal to be so supportive and kind in your time of need.

i hope today finds you better than yesterday, thinking of you, x

I'm glad you're feeling a bit better about things today. Making these decisions whether to take a new drug is horrendous. I've got Epilim to try and am putting off taking it as I naievely think each day might be better. I feel bad enough without more symptoms to contend with but I know I've got to try. Trouble is he's prescribed capsules not tablets so I can't cut them in half to start off with. Sorry to digress.

I'm sure you'll make the right decision, good luck.

Liz

Lizzie I have had Epilim way back, I seem to remember it made me very tired....sleepy.
Sadly it didnt work either. Hope you have more luck.

Charlotte,

Big hugs to you sweetie. My own personal experience with Zonegram was not a bad one at all. In fact, I was at 400 mg... the highest dose one neuro told me I could take when I went to see another neuro who put me up to 500 mg. I had no side effects like you described at all. But ONLY do it if you're comfortable.

Feel free to go to the clinic in Chicago or St. Louis, but know they might suggest the same thing. There aren't many more options you haven't mentioned.

As for me, I'm now on Topamax. I am only feeling tingly at 50 mg twice a day.

Rachel

Hi,

So Sorry to hear that youi are having such a rough time.

I have been to the Diamond Headache Clinic in Chicago, which is one of the clinics you mentioned. I was treated there about a year after the headaches became chronic. The first imte, I was hospitalized for 3 weeks, the second time, for a week. I will tell you that the clinic concentrates more on preventatives than abortives. They do a lot of IVs to see if they can find something that works. Unfortunately, nothing worked very well for me. The clinic does do a low tyramine diet and there are a lot of classes about dealing with migraine etc. I Found them to be somewhat helpfu;. I live in another state and it was very hard to get in touch with them regarding medication changes, problems with side effects, etc. I know that others here have had some experience with diamond and could be helpful too. It was good to find others who had migraine, but that is the only significant thing I took from the experience.

I hope this helps. Keep us posted.

Pain free days,
sailijng

Charlotte,

I'm currently a patient of the Diamond Headache Clinic (DHC). I was hospitalized in their migraine unit for two weeks in April 2009. I left with just as bad a migraine as when I was admitted. We're continuing to try different combinations of preventative meds.

One thing I like very much about DHC is that they give you multiple options for abortives so you're not stuck going to the ER. I had some difficult experiences with doctors prior to this, so I'm thankful for that.

If you have any questions, please feel free to PM me. Hang in there.

Becky

After having a good morning and afternoon because I had my game plan I was TOTALLY shot down by my GP. Back to the tears.

He told me that the Zonegran was my LAST option. And that narcotics will only give me rebound headaches. This was after I told him I did a three month drug holiday from all medications last year and ended up with three months of miserable headaches.

He gave me a script for a steroid pack even though I told him I have not had success with them in the past and they make me extremely agitated. He told me that sometimes we have to do things we don't want to do.

I also asked about Lyrica and neurotin. He said they don't work for migraines and shut me down on that.

And, I wasn't asking him to prescribe the pain med's. I said that as my GP I understood that it would be as co-ordinator for my care. I just wanted to be steered in the right direction. I walked out with no referals or suggestions.

The only positive thing I left with was oxygen concentrator. I've not tried that yet and the company delievered it to my house three hours later. I know some people who have had great success with it. I'll sleep with it tonight.

The only hitch with that was I didn't even think to tell my son that it was coming. My father had had a similiar machine for five years before he passed away. My son was about ten when he passed. With my son's cognitive problems he saw the machine in the house and got VERY upset because he though I dying. It broke my heart to see him so upset.

A friend here on the forum has recommended a neuro who is pain management certified. He's only about 2 1/2 hours away from me. I'm making an appt. tomorrow. So, I am feeling hopeful again.

Thank you all for your kind words. It has helped me tremendously.

Charlotte

Oh Charlotte,

I'm so sorry...I understand where you are coming from. I'm finally getting off my last "preventative" today and I already am better. Still have the M but it's much more bearable and I've made it in to work 3 days in a row and have been with mild/moderate symptoms 5 days now.

I think your GP needs his head examined. My neuro (who is a headache specialist) put me on gabapentin/neurontin at my first visit. It doesn't take the pain completely away but it dulls it so you can function and it does too work! How I'm more functional today. Just if you are sensitive to dosages, have them start low and work their way up (1/2 a normal dose put me under the table). It also sounds like you'll do better without him. He obviously has no clue how to really go about treating these wretched things. What I can say about going to a headache clinic - look up the doctors and see what they are (dang it can't think of the word) - what their area of expertise is. I will agree that they will push preventatives but if they find something that works...it would be great. But they also have a wider range of abortives at their disposal. You aren't at your last option yet...you just need a new set of eyes looking at things.

Wishing you better days ahead.

Becky

One of my staff just came in and said she wanted to talk about something personal. She is a very serious woman and hard to read. I stopped what I was doing and she said she wanted to compliment me on how focused I've been and how "on task" I've been. She said it is big difference from how I was a year ago.

No mention of how much work I've been missing...phew.

Her comments just re-enforced to me that I do not want to go on something that may affect my cognitive function. I have struggled too hard to get my brain back. I love being able to play Jeopardy again!

Charlotte

Charlotte, is your GP being reasonable? It sounds like he is being a little narrowminded to me. Nuerontin is a proven migraine preventative, I was on it for years. I was on a nuerontin/topomax cocktail (I still have a boatload of nuerontin in my medicine cabinet, the topomax ended up working better for me solo). Lyrica has been used to treat migraine for a while too - aren't a few people here on the board on lyrica? How could your GP dismiss them out of hand like that?

And to tell you that Zonegran - or any med - is your last resort? That sounds like he's saying, I give up. That can't be right. You don't have the option of just "giving up", why should he?

Can you find a new nuero? The GP doesn't sound like he can get the job done any longer. I feel so bad for you Let me know if I can help.