Really, really frustrated right now- need some advice and vent

Hi All,

I am really frustrated and tired of all of this right now. The headache is not letting up much at all. I barely slept due to pain, in spite of Zanaflex, even though I was exhausted from fainting 10+ times and pain. I have been up since 430. I just hate this. I am doing my best to hold off an IV as long as possible as they are becoming less effective. Usually, when this happens, I have to stop getting them for about 2-3 months, so that is probably what I will do. I do have another course of decadron left and I can start that today.

I see my pain dr today and will ask him if we can add anything stronger than tylenol 3 to use for the really bad ones. I don't want to go back on the long acting pain meds, just see if we can add something more for breakthrough (maybe an immediate release morphine or even percocet or Tylox.)

I am also really tired of the fainting and am having a very difficult time finding someone who can help me with it. My cardiologist has given up on me and told me that the fainting had to be psychogenic-that I was doing it for attention- because I don't have an arrthymia. I do have tachycardia when I faint, but it is all sinus rythem. My parents and I are also wondering if this could be a strange form of petit mal epilepsy or seizures since anti-convulsants help. My neuro won't do another EEG and has told me that he will only treat the migraines, but he doesn't know of anyone else who deal with this.

I was seen at the Mayo Clinic in Jacksonville 2 years ago and they thought it was Neurocardiogenic Syncope and reffered me to a dr in Toledo, but it is nearly impossible to get in touch with him, which is why I started seeing another cardiologist Depakote and Klonopin help. Once we get Mom a little better, we are looking into going to either the Cleaveland Clinic or Hopkins. Right now, it just feels like I am stumbling around in the dark with no light to guide me. I told mom this yesterday and she said "that's exactly what we are doing." I have tried dilantin, but was only on it for a few days because it is no longer the drug of choice for petit mal.

I am just so tired of all of this. Thanks for letting me vent. The only thing I have today is my dr's appt and then I am going over to a friend's house, but we will probably just chill and watch a movie or something.

Pain free days,
sailingm

The fainting could be seizure related since seizures and migranies are related. The problem is that since Drs still don't really understand migraines, it will be hard to convience them of that.

I know how you feel.....I'm so freaking tired of these migraines..... I get tired of fighting them everyday but I feel like I have to just to stay sane and to keep going.....

Hi All,

Thanks for the kind words.

I saw my pain management doctor yesterday. (Well, I saw his NP, but she did consult with him.) I asked about adding something stronger for the really bad ones and she said she would ask the dr. I told her I didn't really want to go back on the long acting narcotics, but asked if we could add something immediate release for the bad ones. Unfortunately, he said that we could either stay where we are for now or go back on the long acting pain meds. He also had the NP ask me what my neuro was giving for headaches- klonopin and benedryl as needed. Pristiq and Zanaflex for prevention. I told him that for really bad ones I would take some oral depakote. He said that should not be used PRN. And also said that I was on very little medication for the amount of pain I am in. I will see him again in a few months (Unless I need to see him sooner) and we will re-evaluate the situation and consider trying the long term medications again. This all sounds reasonable to me.

The fainting has been horrendous. I have done some research and it looks like the Cleveland Clinic may be the next step. I spoke with them today and they have a good record of treating NeuroCardiogenic Syncope. I will also be able to get in with a neuro to rule out seizures there may also see about a consultation with a pain dr (mainly to see what he would reccomend for headaches that wouldn't cause more fainting and to get anothr opinion.) So that is good.

I am still very frustrated and the pain is trulty horrible. I plan to basically chill today- maybe swim later.

Pain freedays,
sailingm

SM, glad you are making progress. Cleaveland Clinic has an excellent reputation. I hope they are able to find something to help you.

Hi All,

Thanks again for the kind words.

I spoke with the Cleveland Clinic on Thursday afternoon and spoke to a nurse in the Heart and Vascular Center who reccomended that I make an appointment with the doctor who runs the syncope clinic. She also said that it would not be a problem to see a neurologist (both about the migraines and the possibility of seizures), and a pain specialist while I was there. I just feel that we need cover all the bases or as many as we can because what we are doing now isn't working. Right now, just waiting for part of my insurance to clear (I have been told it will clear with no problem as it is medicare due to disability. The BC/BS supplement already cleared and I should be able to schedule an appointment on Monday. For some reason, just knowing I might finally get some help with tthis is helping some.

It looks like my father will be the one to go with me, which is fine. He is not as aggressive as Mom is in speaking to some drs, but won't let them do anything unreasonable. Though, he can be aggressive if needed or if he feels that something is wrong. Still, I am lucky to have such a wonderful and supportive family.

The headache is still pretty bad- hovering at a nine still- after a second course of decadron. All I can do now is what I have been doing. AllI need to do today is some paperwork. At least, pet therapy helps some- by this I mean that Max, our standard poodle is curled up in bed beside me.

Pain free days,
sailingm

Hi Sailing

Long time since I was here but dropped in and saw your post and thought I would say hello.

Such a shame that your still fainting. You had hoped a while ago that you may be onto some answers but obviously not. Good to hear that you are continuing in the search though. Hope Cleveland works something out for you.

The continuing saga of our health woes wears thin though doesn't it? I am hoping I have found a few answers lately, the flip side being more questions have arisen. Really, really hoping that I can scratch a better quality of life from all the effort.

Keep at it girl - one day!!

Hi,

Marion- glad you dropped by, it is always good to hear from anyone here.

I am now scheduledd to go to the Cleveland Clinic on Nov 14th and we are working on getting in with the correct neuro there at the same time. The neuro nurse is coordinating with cardiology to geet me in on the same trip and to figuree out who the best person would be for me to see. we are also trying to speak with a pain guy there. I am just trying to cover the bases and to get all I can, hopefully some answers out of this. Also, this way wee may have a chance at controlling the symptoms, something we can't do well right now.

Thanks for all the replies.

Pain free days,
sailingm

I live out side Akron and I would only got to Dr. Reed at the American Migraine Center. I would NEVER go to the Clinic!!! Dr. Reed is fantastic. Her staff is great and she has the surgeon that invented the surgery of releasing the muscle and nerve. He's the guy who took care of Ted Henry's wife who was house bound with migraines.

A guy my hubby works with has gone both places and Dr. Reed was the one that helped him. He had constant migraines and after some trial and error with meds he is only missing maybe one day a month with migraines. This was a huge success story.

It is so hard to not be a guinea pig at the clinic. I was admitted for what they thoought was flesh eating bacteria in my ankle. The surgeon who admitted me said over and over don't let them tap your ankle until you have an MRI. So we had fights with the students, attending and nurses. I could hear the attending saying horrible things about me. I was sobbing and he came in and asked if I was in that much pain. I said no did you think I couldn't hear you!!!! So he loaded me with Dilaudid!! We told the charge nurse and after my MRI he said he was sorry. I asked him why he said that stuff and he didn't give me a reason. I think she could put the fear of god in anyone with a look. She glared at him the rest of the time I was there.

Anyway refusing the tap was the right thing. The infection did not get into my ankle but thetap would have put it in there.
Before you go there look up Dr. Reed's wbsite, not sure what it is.
Kathy

Hi all,

I am new to the world of migraine - neither have I severe headaches.[touch wood]

But I understand there are a lot of you with difficult migraines.
I want to experiment with music and meditation . To find its influence on the severity and frequency of migraines.

I will keep posting of any resources on both.

Meanwhile, wish you well,

Kris

What cardio testing have you had? Did you wear a 30 day monitor? I have a friend that has the same issue. She was a nurse at Cleveland Clinic and they took her the psych route until she collapsed in the cardio unit during work. Of course they thought drugs...it wasn't and she now has a implanted defribulator. They got reaadings back from that and lets just say her further treatment is very low cost now.
Have you had the echo yet? Did they consider slow QT waves. Sorry to throw all this out there I'm just angry they are blowing you off.
kathy

Hi,

Kathy, thanks so much for the information.

Ihave had a 30 day heart monitor. This was actually read as "normal" by my old cardiologist- until my Mom looked at it and noticed that my heart would get up to 150 during a fainting episode. (This was the highest number- usually it would go from normal 80, up to 130) I really don't see how tachycardia can be considered "normal".

I have had an echo- also normal. I do not have long or short QT waves.

Really, no one is sure whether this is centered in the brain or in the heart. I think it is probably neurolgical- because the only things that have helped at all are anti-convulsants (mainly klonopin, depakote and dilatin), CPAP at night. My mother is a retired pediatrician and suggested that this could be some weird form of petit mal epilepsy- there are noticeable changes to my face, and stuff just before I fall. Mainly, I just stare into space and respond with monosyllables for a few seconds before I fall, then get back up quickly. I am only out for a few seconds.

Both my parents are doctors and I have been seen at teaching hospitals before- so I am not too worried about it.

Pain free days,
sailingm