Ernie

Before I started to have acute syncopes episode (10x a day) I had severe hand pain and hand weakness. I was a massage therapist and could not give massages on many days. I was wearing orthopedic wrist support which helped in a way but made my hands much weaker.

Now that I don't massage or work my hands are much less painful.

Ernie

Congradulation,

You must be eager to see your husband's reaction!

I had to do the same last year. Before I had my hair down to my waist but I lost half of it when I started to get sick.

I always enjoyed having long hair but now I can only manage short hair.

Ernie

Thank you Briarose. I will check with the local hospitals and never know, they might already have a group. I think I could attend the CFS group just to get the experience.

Thanks for listing all the steps. I really appreciate it. I will keep it handy and will email you later when I am more involved in the process.

Ernie

Thanks Michelle,

I will look it up.

Ernie

Welcome home Nina,

Sweet dreams

Ernie

I have been reading a few posts and they mentioned Dr Adbdalah's name. What kind of specialist is he and where can he be found? What is his phone number?

Thanks

Ernie

Unicorn, I am the same. When I try not to shake it gets worse and worse and then it explodes. The pain is much worst and it takes me more time to unparalise. When I wake up after a faint/tremors I also have a migraine and nausea. It seems we have about the same symptoms.

Tylenol helps me with the pain but I need a high dose.

Here we can get a form of morphine from the pharmacy. It is called Dilaudid and it is very powerful (and addictive). I use it sometimes when the pain gets unbearable.

I think that if we suppress it with the right medication it would be OK. The trick is to find the medication.

The propranolol helps with the continuous tremors but when I have a syncope/tremors, it is more seizure and the propranolol does not work. I will talk to my doctor about the muscle relaxant and give it a try.

Ernie

I would like to organise a French support group for the Montreal area. How do we go about organising a group?

What I would like to organise is a group that meets every week or twice a month or once a month whichever people prefer. How do we get patients' names?

I was thinking of calling the Montreal specialists and telling them about my idea but before I start I would like to know how other people managed.

Ernie

Thans Unicorn for giving the explanation. What you explained makes sense.

I went to see a few neurologist and nobody so far as figured out was causes it. This is my main symptom besides the syncopes.

I am going to see a muscle specialist in October and I would like him to find the cause (I believe in miracles!). I would also like to have a medication to stop it , because the complete paralysis lasts for 10 minutes and it is very frightening, especially when I am lying down in the middle of the road.

It takes me 3 days to recuperate from such an attack and my muscle hurt so much it's like they are on fire or something similar.

Before I was diagnosed with POTS and NCS I was sure I had Parkinson. Parkinson tremors are due to damage to the cerebellum.

Ernie

Hi Unicorn,

Thank you for sharing this information with us. I guess I have this symptom because they told me I have seizures (but not epilepsy) or intense tremors. When I get that all my muscles are contracted and I can't move a bit voluntarily and I shake as if a was frozen cold. This last for about 10 minutes. Do the doctors know what causes it?

Ernie

Hi Sharon,

Welcome to this nice board.

Since you were diagnosed last year and you now have new symptoms I would ask my doctor to schedule another TTT.

What is your heart rate supine and then 5 minutes and 10 minutes later?

Ernie

Hi Julia,

I don't understand why they tilted you with your medication. Is that a usual procedure or is it because they wanted to know how your body behaves with proper medication?

Ernie

Hi,

I would not take any pain killer in case it changes the data. I felt the pain and it was very real to me. The neurologist had to hold my arm because my arm would just jump in the air and he was afraid that the needle would damage my muscles. I had no control over my muscles jerking every time they sent an electric shock. Also, the pain caused a big adrenaline rush and I had intense tremors for the whole testing. I understand that we don't all have the same pain threshold and maybe you won't feel anything. I hope it goes OK for you.

Ernie

It's nice Nina that you are having a good trip. Enjoy every moment of it.

Ernie

Could she do a TTT close to your home?

Ernie

Hi Carol,

It depends how much money you can afford to put on a new TTT in a different hospital. If it is within your budget then go for it. Otherwise, you might consider going back to the same hospital. Make sure that they follow the right protocol and that they have a doctor present during the TTT.

I don't think your doctor thinks that you are nuts because he would not have suggested that you redo the TTT.

What was his interpretation of your first TTT?

I agree that you should redo the TTT while you are weened for the BB.

Good luck

Ernie

Hi Sue,

I had 2 EMG done and they were both negative. They were to test why I have muscle weakness.

It is a little bit painful because they insert a needle in your muscle and then send an electrical current. It took me 2 days for the pain to disappear.

Ernie

Hi Carol,

I am sorry that your TTT was such a mess. There are 2 reasons we are strapped on the TTT. 1- So that we don't fall on the floor and hurt ourselves when we faint, 2- so that we don't move around to compensate for the symptoms. It seems that the nurses were not qualified to do this test.

No fainting does not mean negative TTT. Many POTS don't faint and you may be having a good day. Also, the fact that the nurse told you to move around when you started to become symptomatic changed the data.

I have read that the normal lenght of TTT is 45 minutes. Some do 30 minutes and then inject the isoproterenol to trigger an episode. Some doctors wait until you faint and other doctors bring you down when they see the BP and HR going down enough.

Taking vitals every 5 minutes is way too long. BP can crash in seconds and they will never see it. Also, they will miss the fluctuations. I don't know what they were looking for but it seems that they don't know much about dysautonomia.

I would certainly ask for another TTT in a different hospital and check their credential before going.

I understand how upset and frustrated you are. I am proud of the way you answered the nurse just before you left.

Ernie

Hi Carol,

Welcome to this nice Forum. I am too tired to think straight but I am writing to you tonight to wish you good luck for your TTT tomorrow. I hope that you find your diagnosis and proper medication.

Hugs

Ernie

I agree with what Julia just said. I have no tumor and my adrenals just produce and produce and produce and doctors don't know why. Research on the subject is still an ongoing process.

Ernie

Good luck Morgan and keep us posted.

Ernie

Thanks Michelle and Susie. I will check in a couple of months.

Ernie

Have a nice trips, take many pictures and enjoy yourself.

Ernie

Hi,

I would like to know if someone is going to the conference next week.

I would like to go but it is more than 30 hours round trip and my health is not good enough for the adventure.

Could anyone tape the conference for me? I would pay shipping and other costs.

Thank you.

Ernie

I have diarrhea very easily. I did any allergy test to elinate all the food I am allergic or intolerant and this as helped me much. I have to control what I eat all the time. I take immodium only when I have gastro-enteritis.

Ernie