Update- Cleveland Clinic visit

Hi All,

I went to the Cleveland last week to see what they thought about the fainting problems and the headaches. It was a very interesting and informative visit.

- I saw the cardiologist, who specialized in fainting. He did several tests- tilt table with transcranial doppler, hemodynamics, ECHO, and and a QSART- sweat test. However, it is beginning to llook like we aren't dealing with a cardiac problem after all- well it doesn't appear to be a straightforward case of POTS/Neurocardiogenic Syncope. On the bright side, it may mean that we can rule out the diagnosis of POTS.

-I also saw three different neurologists- a headache specialist, an epileptologist, and a specialist in headaches and vestibular problems. I also got about three different opinions.

The headache specialist told me that " He couldn't deal with the headaches until the fainting was controlled." He also informed me that I was one of the worst migraine patients he had seen in his life. He does not use any pain medication to treat migraines and reccommended that I get off all the pain medications for a year and see what happens.

The vestiblar (balance and dizzy) doctor was pretty helpfel. He was not sure that this was New Daily Persistent Headache. However, it is probably chronic migraine. He did reccomed some things though. I am going to try Trileptel to see if that will help. He also recemmended some physical therapy for the neck. The PT I saw was wonderful and gave me a few excercises I can do at home. These do seem to be helping some.

The Epilepsy specialist ordered an ambulatory EEG ( this will be done by a collegue who is at the University near here.) This will rule out seizure, She also mentioned the possibility of non-epileptic seizures. Both can be treated.

To sum it all up:
-Everyone agrees that something weird is going on and that is detrimental to quality of life.
-No one is sure where it is coming from- but most agree that it is a combination of everything- the headaches, and fainting.
-We have probably ruled out POTS- it is not coming from the heart.
It is probably coming from the head.
Right now, the plan is to see if the trileptal will help, start tapering down on the Klonopin and Tylenol 3, and see what happens. I will follow up with them in a few months.

It was quite a long week and now the post stress migraine is back with a vengence.

Still, it is much better than simply groping around in the dark as we have been doing.

Pain free days,
sailingm
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SM, glad the visit went well. Hopefully the new medication will help, or they will find another that will at least control the fainting. A whole year with no pain meds? Really? What are they going to do to help you when your pain is through the roof?

Glad you were able to make some progress! I have NDPH and I am familiar that you can have it plus migraine, or it with migrainous qualities. NDPH would usually be daily from the start, but can occur on top of previous migraines. Chronic migraine would be more of an increase infrequency of episodes until they are daily. NDPH is more likely to be 24/7. Just because you have migraine symptoms I don't think NDPH would be ruled out. Not that it matters too much because there aren't different treatments...just that I find doctors are more likely to recognize how stubborn NDPH is, less likely to think you are in rebound, and maybe slightly more likely to let you try opiates.

Many headache speicalists still don't recognize NDPH as different from CDH though. I disagree fully with the doctor who thinks all migraine/headache patients need to be off pain meds. Some, like me, do much better on them. After trying everything else, if they help quality of life, why not? There is way too much opposition to them. The issue would be more in the start if rebound was a possibility, preventatives hadn't been tried, etc.

Rebound headache is rare in NDPH and rare with pure opiates (vs. combo meds like Excedrin), but of course being aware of rebound symptoms/characteristics is a good idea. That is usually the big reason they give. That, or age and dose escalation (I'm 25 and on what they consider high doses already). I'm trying to find a more aggressive doc as I'm stuck where I am now. Want to get back to where the meds turned my life around, not just helped better than the nothing the other doctors offered me.

If you did want to go off pain meds to get a baseline (not a bad idea if you are unsure), I son't see a reason that takes a year unless you were to spend 10 months tapering lol. Wow. Best wishes and good luck.

Hi All,

Thanks so much for the advice.

One doctor said it could be NDPH, but as he understood it,"NDPH usually happens in people who don't have any history of migraines." I don't fit into that category because I did have a history of migraines before the headaches became chronic. I am still pretty sure it is NDPH though as I fit most of the criteria- I can certainly tell you where I was, what I was doing when the headache began. Mine are also intractable. For the past fourteen years, I have only had two periods of remission. Both times, the headache came back with a vengence and I have some level of headache all the time.

Medicine- I don't agree with getting off them for a whole year. However, in order to get a baseline-again, I am starting to taper off the tylenol #3 and Klonopin. For some reason, they feel that both are making me faint more. I will give it a shot. However, I have no clue what to do when the pain gets bad. They did not suggest anything either. So, I will taper off them and see if it improves the fainting. Howevver, I know that the fainting gets worse when the headache gets worse. If nothing else, it might prove once and for all if the medication is contributing to this situation.

I just hate having to deal with this again. In many ways, I am a little scared of the pain. (Recently, my pain dr told me that I was on very little medication for the amount of pain I am in.)

Pain free days,
sailingm

I'm getting really annoyed at these doctors who just blithely say "don't take any pain meds" with nothing else to offer. Id like them to go day after day with someone banging a hammer on their heads and see how they feel about no pain meds

Yes NDPH more often occurs in patients with no headache history, but there are quite a few documented cases of folks with migraine on top of it, migraine symptoms, or having multiple remissions of NDPH. I hope you can get through the taper off and break soon to prove you do better on the meds (and in fact need more). Its ridiculous how under medicated the majority of us are who have long histories of daily headache which doesn't respond to anything. I too have had many doctors say get off the meds but don't have any ideas for what I can try which I haven't already. I just keep blindly going to new pain doctors to try to find a compassionate one who isn't afraid to treat a 25 year old with opiates. Best wishes.

Hi All,

Thanks for all the advice and support.

I know that NDPH can occur in patients with a previous history of migraine. I have been diagnosed with New Daily Persistent headache/chronic intractable migraine. I was diagnosed with NDPH at Jefferson in Philadelphia. I do fit the criteria and I do not think that a previous history of one or two bad migraines a year, prior to age 17, would rule out NDPH. When I was seventeen, I was playing field hockey and the other team turned into purple spots It felt like previous headaches, but that headache hasn't completely gone away in the last fourteen years. So, yes, I think it is NDPH. I just think my situation is not a classic case.

I have no clue what I am going to do without pain meds. I know I will survive. But I really hate having to get off them just to show thatit doesn't make the fainting worse and to show that I am not in rebound or medication overuse headache.

One of the doctors felt they were contributing to the fainting-and might be the cause of it. (This was the headache specialist who does not believe in using any pain medication at all for migraine.) He said it wasn't NDPH, but rebound. Also, said that the medications increase inflamation? He reccomended that I get off the medication for a year, because that is how long it takes to see improvement. Then stated, he couldn't help me anyway because I could not to their headache clinic until the fainting got better.
However, the other neurologist I saw, who specializes in dizzines/vesitbular disorders had another opinion. He felt I should taper off them for a while and see if it helps the fainting. He also said that "if going off the medication helps the fainting, but increases the headaches to the point where I can't function, then it isn't a good solution."

My current plan is to taper off the pain meds- then, see what happens with the fainting over the period of a about six weeks or so. I think this will let me know if they are contributing to the problem or not. Then, I will go from there.

I just hate this. I am so tired of having to prove to doctors that the meds aren't causing the fainting. But, I will give it one more try.

Pain free days,
sailingm