Scared and at the end of my rope

Hi All,

I just don't know what to do anymore. I am fighting against the migraines and fainting with all that I have, but it doesn't seem to be enough. I have been fighting the migraines for twelve years now and the fainting problem for two years. I know what the migraine problem is- chronic intractable migraine?new daily persistent headache. Right now we have only theories as to the fainting- it has been diagnosed as Neurocardiogenic syncope, but akmost all medications and medical interventions have failted.

I have two broken neurostimulator wires, which will be corrected sometime this summer. We know this will help the headaches= but probably not the faitning problems. I have also blown out my left knee from fainting so much. So cruthes are now in my future= we are going to get some today- along with some knees pads for protection.

I don't know what to do anymore. I don't understand what is happening to me or why. Ot realy feels like my own body is betraying me bit by painful bit. I understand the meaning of the words st paul spoke all those years ago " the spirit is willing, but the flech is weak."

I know that I need help- I need to get to the bottom of this. But I don't know how. RIght now, we are talking to the cleaveland clinic to see if they can help. All I know is that this is not the kind of life I want to live, it is getting harder to fight, but I won't- or cant give up. I will see if I can get in for an IV soon. I am also waiting to see where the service dog will go.

I am just terrified right now and I dont know what to do anymore.

Let me know if you have any suggestions.

Pain free days,
sailingm

I am sending a hug of empathy. Its all I can manage myself right now.
Take care.
Pen

If I had any ideas, I would have offered them ages ago. So sorry you are struggling against your body. Saint Paul was quite correct with that verse ... I know exactly what you mean. So do all the elderly and most migrainers. I would suggest you accept your lot in life, but that is the wrong angle right now. I sincerely hope you get to the bottom of this fainting condition - what a nightmare! But if only you could discover the "why" I know it would be better bearable if not curable. I wish you and your parents well as you seek answers to this horrible illness. hang in there.

Hi Sailingm,
Sorry no suggestions, but wishing you well and I hope you find some answers. There does seem to come a time when we feel we can take no more, but somehow we find a way to move on. You sound a true fighter and give inspiration, thank you for that, and the best of luck with your search,
Peter

Hi SM,

I know in past semi-recent discussion the vegus nerve theory and menieres disease came up in the mix of possible causes of severe vertigo/syncope spells. I have taken absence for a little bit now and do not know if you went into testing for these things. I have much knowledge about this type of condition so please forgive me if I am off-base but even the smallest suggestion sometimes helps.

I am thinking of you and hoping something large or small comes your way and leads to a good discovery.

I wish you pain free days soon.
LG

Sailing, hang in there girl.
There HAS TO BE an answer to this.
In the mean time, can you manage to get down to the American equivalent of the RSPCA. (Royal society prevention of cruelty to animals) - don't know what yours is called.
Over here the shelters have volunteers who walk the dogs and give a hand.
Get yourself in training for your own assistance dog.
Or if worse comes to worse learn how to train one yourself.
Dogs are the most amazing creatures - not very bright the majority - but if your shelters are like ours (full of nice people) they may be able to help you teach your own dog.

Sailinm,
I am so sorry to hear that you're struggling so horribly...no one deserves such a hard time.
Unfortunately I have no practical idea. I can tell you what I'd do, but please, take it as a personal and objectable choice.
I'd give up all what's done so far and start all over again with other hospitals, doctors, cures.
I'm quite drastical in these things. If something is not solving my problems, I try a completely new way. So far, it has worked - at least for my health issues (I'm not talking only about migraines).

I hope that there's someone who's taking care of you (family, friends, boyfriend...). You can't face all this on your own

Take care dear SM and keep us posted.

Hugs

Hi All,

Thanks for all your help I don't know what I'd do without all of you here.

Well, my mother read some stuff about fainting and the doctor at the cleaveland clinic. In an interview ( there was a transcript on line}, he suggested that going off the zanaflex might help- he also said this about pain medication. This led to an argument etc, However, I will tasper off the zanaflex- which is the only thing allowing me any rest at all right now. The same goes for Tylenol 3. I will try it for a month and see if it helps. If not, I know that is not causing the problem. In fact, I am certain of it- but I have very little to lose right now.

Yes, my roommate, boyfriend, and other friends are helpig right now.

I did pick up some cruthes and knee pads yesterday- they seem to keep me more stable and the knee pads do help.

There is a therapy dog group here and I think I will talk to them to see what they reccomend. Other applications to various places have been sent in.

I don'g know what to do- other than beg for depakan- pray- and hope I survive this one. I hate this.

Pain free days,
sailingm

Sailingm,

I wish I could give you some words of wisdom or help in some way. All I can do is offer my empathy and prayers. Continuing to keep you in my prayers.

Life must be so difficult. I hope the therapy dog thing comes through for you. It would be so helpful if a dog were able to sense a faint coming on so you could be prepared.

Hang in there and keep trying to find an answer. There has to be some explanation for the fainting and hopefully you'll find the right expert who can figure it out for you.

HI All,

Thanks so much for all of the replies. I am not sure what I would do without y'all.

I agree that there has to be an answer to this whole problem. I never thought of meniere's, but I will look into it. I think we start over with this. We definitely have to start with a different dr.

Two weeks ago, I was able to go my cousin's wedding and I talked to my uncle's college roommate. (Note- when you come from a family where they are all physicians- all thier friends are physicians as well. Yes, my grandfather was a doctor, he had three sons and one daughter. All of his sons are in the medical field- radiology, internal medicine, and dentistry.} Anyway, my uncle's friend has a daughter-in-law at working with rare diseases at UNC Chapel Hill. He offered to speak to her to see if there is any research being done or if they just wanted to see a really weird case and see if it could be genetic. I also fainted while I was talking to him. He had that weird look that only doctors get when they go- "this is so weird, but this is so cool." He is also a doctor and my uncle had already spoken to him about the problem. So the next step will be to call my uncle and get his number to see if he can help. It may be a shot in the dark, but I have nothing to lose.

On the dog front- I have several applications in. However, while my roommate and I were out to lunch yesterday, I noticed that one of the patrons was a policeman with the K9 unit. He told me where the dogs are trained. I know this might be a long shot, but I can call and see if he reccoomends anyone or if he would be willing to help me train a dog that might be unsuitable for police work.

Nothing has made a dent in the headache. I have an IV set up for Mon. Meanwhile, I guess the only thing I can do is take it easy. try to distract myself and go from there. I just wish I could get the pain under 9.95.

Pain free days,
sailingm

Sailing Muffin,
Lifting you up in prayer..sorry, I don't know what to do. I'll be praying that the people involved in your case will have the answer..praying, for your team.

We love you.

Hi All,

Thank you for all the comments and advice. I am in so much pain right now that it is nearly impossible to function. All I can do is wait it out until Monday. Basically, I am living on hope and prayer and some mild sedation. This is not a great thing at all. My friends have been great. All of you have been great too. I will call my uncle's friend tonight and the K9 people tomorrow.

Right now I am just trying to survive. I know I will get through this. It is just that getting through it is the hard part.

Pain free days,
sailingm

Hi Sailingm,

I have no idea what to suggest regarding what you are going through with your health, but just wanted to make a suggestion re the dog. Have you considered speaking to groups who train guide dogs for the blind? I was going to raise a puppy so I went to an information session. The organisation mentioned that 'reject' guide dogs are often used for other therapy purposes, so you might want to see whether a 'reject' guide dog may be suitable for you. Even if it isn't suitable (or possible to get a dog this way), perhaps you could talk to their head dog trainer and find out whether they have any suggestions for you. You never know what info they might have.

Pat

Hi Sailing Muffin,

So sorry to hear you're going through this. I've also had some problems with fainting/migraines lately. So in a small way I can relate...and know it must be heartbreaking to be in your situation.

"He had that weird look that only doctors get when they go- 'this is so weird, but this is so cool.'"

Unfortunately I know this look well! I have a really rare aorta defect that compresses my trachea, so although I've been to about 5 lung doctors, none of them have seen anyone like me. My current pulmonologist was like...."Do you realize how fascinating you are?" And I was like well I guess...could you help me with XYZ, and he was like "No REALLY, do you realize?" Not so reassuring I think. Good grief. He is the head of the pulmonology department at Duke.

I've heard really good things about the therapy dogs though. My friend has a friend who trains corgies in California to help people with seizures and migraines, so they have warning to take their meds. I think that is a great idea so that you won't be alone.

Take good care! And I'm praying for you. Someone has to figure this out eventually.

Angel