Convulsions

I don't get convulsions. Having had one attack a month on average I have only passed out twice, once at work in the toilet and once in bed - over 35-odd years of attacks. But controlling this depends on rapid deployment of heat without which I'm sure that I would have passed out more. Be prepared, have a kettle filled and ready. Use a hot water bottle or hot pad, and take a hot drink as soon as it starts.

I mentioned Ginkgo Biloba in another thread. For me this has halved the number of attacks, and is the best I've had it ever since I can remember.

See your GP - there are pain killers which you place under the tongue, but for me the side effects were worse than the pain, although relief was rapid.

[quote:5e7cdca824=\"G\"]I've been suffering with this now for about 15 years and on most occasions have passed out.

I'm now getting seriously worried, my last two attacks have ended not with me fainting (it's been close though) but laying on the floor having convulsions the pressure of which involuntarily empties my bladder. The other thing is I keep getting warning niggles during the day now (I have only had about 4 attacks during the day over the last 15 years), it petrifies me that I may have one of these attacks at work.

Has anyone else experienced these convulsions?[/quote:5e7cdca824]

Hello my name is Rob Blake from the U.S. I have been suffering with this for over 15 years. I was diagnose with this in May of this year. It took all this time to find this out. I have a severe case of this. My symptoms are cold tingles on my skin, like cold water drips, my hearing goes down, and my sight become white. It`s like I`m going to faint. What I was told on that is your blood pressure is dropping. The only way I can control it is a Hot Bath. This does help, but it may take a couple hours as this is fighting the heat. I have an average of two attacks a month sometime`s more. Once in while I will have one during the day. I`m not here to make claims, but I did receive an email from a company I represent, and he checking out this diseases. I have been using these products that seem to help. I do not know which one i`m benefiting from the most. So I`m doing my own test. Since there is no case studies being conducted here in the States. I will visit here and share my results with everyone who is suffering with this. If I can lower these attacks by half I would be greatly appreciated. So i will be keeping everyone informed if there is some positive results. I`m sorry to hear your extreme case, but I thought I would share mine with you so you do not feel alone. It is scary when the symptoms that you are going through are this extreme. I hope you find some comfort from this reading my symptoms. I look forward in hearing from on this.

Warm Regards

Rob Blake

Thanks guys.

I've tried hot baths before but never a hot drink I'll give that ago. I must admit though I think I'll be going to speak to my doc about this as the last few attacks have been getting substantially worse.

I just wish I knew what caused it so I could take steps to prevent

Hello, hope things go well for you at the doc`s office. I have heard sometimes stress can cause it. I have noticed one thing about this is. If had some urgent appointments to meet, that would cause me to be a little bit of stress. Later that night when I go to sleep I will have an attack. I do not know if because the stress is gone and I`m relaxing and my body has come down from that stressful ordeal thats when I can have an attacked The best thing I can suggest is keep a journal and see if you have the same as me, or anyone else. I hope this gives you some more insight to work on.

Regards

Rob Blake

Amazed to find that other people suffer with this. With me the pains started a few months after giving birth to my second child, now 4 years. It was a tough birth because I developed heamatoma in the uterus and was on the operating table for 4 hours being drained of blood from the uterus, stitched etc. I have always assumed that my pf started as a result of this but I may be wrong.

Resently the attacks have been quite frequent but mild and mostly during the day apart from one last week and last night, both during the night and the one last night took me in an ambulance to hospital because my husband thought I was dying. I passed out, my bloodpressure dropped to an abnormally low level, I had heart flutters, cold sweat which turned into a burning sensation all over my body. Today I slept for 6 hours after getting home from hospital. This attack was the most awful thing I have ever expeprienced. I still have a strange sensation like one would after a leg spasm. The doctor at he hospital had to google this condition and agreed with the diagnosis but could not explain the bloodpressure and passing out other than just my reaction to pain.

I will now get all the vitamins and remedies mentioned on this site and work my way through them because this I do not want to experience again. Good luck to all of you. I is good to have found this site.

I wonder if surgical trauma makes a difference. I had my appendix removed aged 9 in 1962, so it's a BIG scar.

Makes me wonder if the internal scar tissue causes the spasms. I have no memory of PF before that.

My appendix was removed at 17 as well. Hm...Haven't had another episode in a month.