help...meds needed for POTS migraines

[charlie1]

Can anybody please tell me about their experience/success with migraine preventatives?
Anybody using cymbalta or lyrica for pain management without experiencing significant side-effects?

I have no way of knowing if the Mestinon I started 10 days ago for my POTS symptoms is working b/c the 2-3x wk migraines are debilitating. Sometimes they last 2-3 days giving me respite for only a few more days until the next migraine appears.

I was quite hopeful and my mood was relatively good until as of late. The increasing frequency of migraines is causing depression to set in. I need help with pain management asap.
Thanks to any suggestions/advice.

 

[Sallysblooms]

I am unable to take anything for pain, tried many things. I had migraines for years. The only thing to work was testing hormones and getting them balanced with bio identical. Worked within a day or two. Haven't had one in almost four years. I am not on meds for my POTS/Dysautonomia, just supplements. Is the med. causing them for you?

 

[charlie1]

Because of prior endometriosis, I cannot take bio-identicals although I know my hormones are out of whack.
Migraines started after a major car accident 7 yrs. ago leaving me with the effects of severe whiplash to this day.
Then early last summer I started experiencing symptoms that fit the consensus criteria for ME/CFS. Then developed OI in Sept. '12 and began florinef. Was diagnosed with POTS in Jan '13.

I have been mostly house bound since September but only started the Mestionon 10 days ago. The migraines started to increase early December but no idea why. The POTS is bad enough but I think the migraines are worse.
I was once so hopeful but now losing hope.

 

[Sallysblooms]

Don't lose hope, others will respond with more ideas. Always keep looking for good integrative MD's and information that might help.

 

[Ruthie24]

I developed POTS/NMH/OI 2009 and was diagnosed with ME/CFS 1/13. Have had horrible migraines (up to 19/month) since 2009. Have had benefit from topirimate as a daily migraine prophylactic. I couldn't tolerate cymbalta as it gave me a really nasty headache non-stop. Started on a very low dose of topirimate though for several months.

 

[SOC]

My daughter had great success with Treximet, a migraine medicine. It worked best if she took it as soon as she had any hint of symptoms.

 

[charlie1]

@ Ruthie24- thanks for your response. I would not be able to go on topomax b/c weight loss is a side effect. I've lost 12 lbs in 7 months and continue to lose. I was quite thin to begin with.
Lyrica is also an anti-convulsant so perhaps it will provide migraine relief but I'd feel better if I heard some some success stories with it.

@SOC- thanks, I often get relief with a migraine abortive called Maxalt. Unfortunately, the pharmacist and dr. say I'm risking migraine rebound and possible cardiac issues with the amount I'm taking. I'm having 12-14 migraines/mth., lasting for days. That's why I need to find a migraine prophylactic. Beta blockers are out b/c of low blood pressure and bradycardic at night. Cymbalta's been suggested by my dr. but my research doesn't show consistent success. Ruthie24 sure didn't.

anybody else have experience with cymbalta or lyrica???

 

[Ruthie24]

Have you tried neurontin/gabapentin? They had me try that first. One of the side effects is weight gain. While I was thin before I started it, I was happy to go on the topomax and lose the weight I'd put on after trying the gabapentin.

When I tried it, it seemed to work at a lower dose than my doc wanted me to stay at. He kept wanting me to progress it up to higher doses but I couldn't tolerate those higher doses. If I had stayed at the lower ones, it may have been an ok med for the migraines.

 

[Ema]

@ Ruthie24- thanks for your response. I would not be able to go on topomax b/c weight loss is a side effect. I've lost 12 lbs in 7 months and continue to lose. I was quite thin to begin with.
Lyrica is also an anti-convulsant so perhaps it will provide migraine relief but I'd feel better if I heard some some success stories with it.

@SOC- thanks, I often get relief with a migraine abortive called Maxalt. Unfortunately, the pharmacist and dr. say I'm risking migraine rebound and possible cardiac issues with the amount I'm taking. I'm having 12-14 migraines/mth., lasting for days. That's why I need to find a migraine prophylactic. Beta blockers are out b/c of low blood pressure and bradycardic at night. Cymbalta's been suggested by my dr. but my research doesn't show consistent success. Ruthie24 sure didn't.

anybody else have experience with cymbalta or lyrica???

Cymbalta was very bad for me.

I only took it for a couple of months but some of the side effects that developed have persisted for years. When a dose wore off, it would feel like someone was lighting my back on fire. I also had issues with waking up in a fit of rage at night.

Of course, I also had untreated adrenal insufficiency at the time so it is very likely that some of the side effects were caused by the effects of the med on the HPA axis. Still I would personally never take it or anything like it again.

Ema

 

[SOC]

Cymbalta's been suggested by my dr. but my research doesn't show consistent success. Ruthie24 sure didn't.

anybody else have experience with cymbalta or lyrica???

I take Cymbalta for muscle/joint pain from ME/CFS. It has worked really well for me, but I'm having a hard time seeing it working for something as acute as migraine. While I've had no problems with it, plenty of people have had a lot of trouble, so I'd be very cautious -- start low and go slow. It might be better to try Lyrica first just because there seem to be fewer people with ME/CFS having serious problems with it.

 

[Gamboa]

I should know this after all our conversations but my brain isn't working very well right now: do you have a neurologist? They would be the best one to recommend meds for migraines.

As I have mentioned to you I have two. One is actually a specialist in headaches at the Ottawa Hospital and he really knows his stuff. When I first went to him a few years ago he prescribed amitriptyline, one of the tricyclic antidepressants that are now used for migraine prevention. The other is nortriptyline. I didn't like the idea of taking something everyday so never filled the script. A year later I went back to him and he prescribed topiraimate (Topamax), an anti-seizure drug used as a migraine preventative. Once again I decided against it. In the meantime I took Zomig, a drug you take once you get a migraine. It works quite well, provided the headache is actually a migraine and not a tension headache. I get both and sometimes at the same time so it's hard to tell.

Anyway, in the meantime I was taking 5-HTP, the precursor to serotonin, and found that I was having less headaches. Every time I ran out and didn't take it for a few weeks my headaches would return. Last summer when I went back for my annual visit with the neurologist he said to continue with the 5-HTP!! I was surprised. He didn't know a lot about it but said it made sense that it could work.

Last fall I was referred by another doctor to a different neurologist who prescribed topamax. I decided that since I am still getting migraines and that two different neurologists have suggested the same drug that perhaps it would be a good idea to take it. I am now taking it but then recently ran out of 5-HTP. Guess what? I have had bad headaches every day ever since. I am now taking 5-HTP again and we'll see if that really makes a difference. So far, so good.

By the way, I haven't heard of Lyrica or Cymbalta as a migraine preventative. Is this a new thing?

 

[SickOfSickness]

I sent you a PM.

 

[Shell]

I am on amitriptyline for pain. It's also prescribed as a migraine preventer (a family member is taking it just for that). What I've found however that in my case it doesn't stop the migraines completely so I take migreleve (pink) when I get an aura.
Migreleve and amitrip are contraindicated so I am cautious and don't take the doses close together.
If you get an aura that's when to take meds I think because, at least in my case, if I wait to see if a migraine will develop it's too late.

The other thing that helps is throwing up. But it's a nasty way to treat it!

You may need to work with your doc in a trail and error approach as some drugs suit one person but not another.
Gaberpentin is worth a try

Also, as you seem to have them as a result of whiplash perhaps you should see a chiropractor or osteopath.

 

[bertiedog]

Hi

I also suffer with horrendous frequent migraines which in my case seem to mainly be diet related. I cannot tolerate any cheese or chocolate or alcohol or MSG. When I recently stopped all cheddar cheese I thought I was ok with some Brie or Jarslberg, both very mild cheeses but the migraines then changed and instead I began to have massive issues with dizziness and my balance followed by migraines that would last many days. I looked and felt so ill but if I don't eat any of these things the migraines go, I might just get the odd bad head which will respond to normal painkillers.

My experience is that our body and brain changes as time goes by so it might be worth you looking to avoid all migraine triggers in your diet and keep a diet journal to trace what could be going on. I was only able to see what was happpening by looking back at how I had been and what I was eating.

Also look out for fillers in supplements because I have read how a substance like maltodextrin can cause big problems for sensitive people and this is often in supplements like probiotics.

I have tried lots of migraine preventatives but I am very sensitive to meds so could only tolerate very low doses which were never high enough to stop attacks. I still take 20 mg Propananol to help with POTs but the dose isn't high enough to stop migraine attacks in my case.

Good Luck because I know that constant migraines can make one feel suicidal.

Pam

 

[Sea]

Hi

I also suffer with horrendous frequent migraines which in my case seem to mainly be diet related...

I looked and felt so ill but if I don't eat any of these things the migraines go, I might just get the odd bad head which will respond to normal painkillers.

Pam

I am really pleased for you Pam that you have identified some food triggers for your migraines.

Often there is a level beyond which we are intolerant but if we keep the level low we are fine. Some studies that were done with MSG in particular found that almost everyone will develop a headache if exposed to a high enough dose, just that our thresholds are really low.

The reason I mention this is that if you are still getting some headaches it might be worth doing a little more digging. MSG is only one of the glutamates and some people need to keep their level of exposure low to all glutamates (naturally high in tomatoes for example)

The cheese, chocolate and red wines are common migraine tiggers that are very high in amines - but they're not the only amine containing foods, just the highest.

I used to say that for me eating cheese or chocolate was like playing Russian roulette, sometimes it would give me a migraine, sometimes not. Since doing an elimination diet that focussed on the different food chemicals that can trigger migraines I've discovered my safe levels of tolerance for amines. I know where they hide so I can keep my overall levels low while not having to completely avoid any one thing.

 

[charlie1]

Thank-you everyone for responding with your suggestions.
This has been a very frustrating road to travel. I've had them since being a teenager but after endometriosis forced me to have a hysterectomy at 47 yrs of age, they disappeared! Then 2 yrs later I was in a serious MVA which caused severe whiplash that I'm still dealing with today, 8 yrs later . Migraine was one of the results also. They were bad but not until POTS developed last summer did they increase in frequency. The number of things to consider when choosing which prophylactic to go on is so difficult, especially when considering how it might affect my POTS. I am so afraid of making things worse for myself (housebound) that I become paralyzed with the options, so to speak. Many of you are in the same boat so I'm sure you understand my hesitation and fear in making this decision. But my husband is right, the migraines are becoming more of an issue than the POTS and I can't go on like this anymore....depression is setting whereas before, that was not an issue.

Some of you have made wonderful suggestions, thank-you. I've been fighting the start of another migraine since noon today so I'll summarize what I've tried instead of replying to each post --

I cannot be on any drugs that might lower my blood pressure or pulse any further so some of the common first choice meds are out. Also, it is preferred to not go on anything that might cause weight loss as I've already lost over 12 lbs with POTS and I was already thin. I do take proven documented supplements- 700 mg Magnesium/day and 100 mg Vit B Complex to name a few.
Drugs that I recall being prescribed are nortriptyline, amitriptyline, prozac, cymbalta, and lyrica as preventatives. I was not on the SSRI's very long b/c of side-effects, the same goes for for the lyrica (it's unlikely, but I wonder sometimes if the Lyrica caused my POTS as i was on it just before my symptoms got bad).
For abortive measures, I've tried percocet, tylenol w codeine, Amerge and Maxalt. But only the Maxalt works (usually) but as stated, I take too many.

I've paid so much money, lost so much time going to chiropractors, massage therapists, physiotherapists, tried acupuncture, meditation/yoga, gone on gluten-free diet, dairy free diet, candida diet. I stay away from chocolate, wine/spirits, and eat cheese sparingly.. never aged cheese.
Yet, I still get migraines.

I waited 6 months to get into see a pain specialist. After an examination which included trigger point assessment, he said the MVA resulted in me having 'myofascial pain syndrome' with a weakness for migraines/tension headaches. He gave me marcaine shots into my neck and spine to relieve tension that may be contributing to the migraines- I passed out 5 min. later when the epinephrine caused my already low blood pressure to nose dive. That was the one and only time that I saw him.

So, dealing with my migraines has not been an easy journey. I'm leaning towards trying the Lyrica again b/c my paranoia of it is not logical. It's very likely that I have ME/CFS which developed into POTS along the same time as trialing the lyrica, therefore a co-incidence that I experienced an increase in symptoms leading to OI. Not that the lyrica caused it. I believe now that I did not give it a fair chance and being that anti-seizure medicine is one of the top drug choices for migraine prevention (by neurologists), its worth another shot.

Thanks for taking the time to share your suggestions. And thanks for allowing me to share my frustration.
Charlie

 

[taniaaust1]

Its always sad hearing about someone who's tried so much for a symptom without any success. I really hope you find something else to help your migraines soon.

If you cant find anything.. maybe some hypnosis sessions with a very experienced person would help. Hypnosis has even been used in major surgery instead of anesthestic.

 

[Shell]

charlie, my heart goes out to you. I've named my disease set Shambles, because that's the bloomin' result. I hope you can find some relief soon, especially from the cluster migraines. It can feel like you've lost a couple of weeks of life completely when they happen like that.
One thing to face - and this one is hard - is that for many of those people who have overcome their migraines, that is all they had. For us, we are fighting a multiheaded beast of a .... well, of a shambles.
All we can do is take it one day (and on a bad day one hour) at a time.

KBO

 

[mrsnelson]

My daughter takes a nasal spray called Migranal....it is the only thing that will take away here migraine other than being admitted to hospital for DHE....she has POTS...EDS...and I am now looking into MCA.

 

[IHPA]

My daughter started getting migraines when she began down the CFS path. She was prescribed Topiramate and it helped but didn't completely get rid of the headaches. But adding Magnesium into the mix has helped greatly. Do try magnesium if you haven't already. About 300mg I think. Don't overdo it, as it can be toxic if overdosed.