Does anyone know if HD can cause blackouts

MJGarcia

My daughter had one four years ago and fell through a wall. I don't think it was the HD itself that caused it. My guess is that it was caused by the medication (zyprexa) she was on at the time. She has long been off that med and it hasn't happened since.

let me start over....My mom has HD and so did her mother and also her mother Plus my mom's brother... I know that I am at risk and have been debating getting tested... we just had to put my mom in a nursing home she was told about 6 months ago that she has stage 4 lymphoma and during this time her HD symptoms have gotten worse. I have been under a lot of stress with all of this and have started to blackout (about 6 to 7 times in the 4 days) and show signs of uncontrollable jerking in my legs and arms and body also have very bad headaches and i am getting very irritable and have a hard time concentrating. My DR says it is stress related which it could very well be, but I am wondering if I should have the test done. I have not mentioned this family history with my DR in fear of it being on record. I am also turning forty this year.

MJGarcia

hey there...hmmm, i am 51 and symptomatic for about 6 years, early stages. I havent had any problems like this, and havent heard of this either. But a couple of years ago i had a mini-stroke and had seizures with that, non hd related. I would check back with your doc again for sure. Even if it is stress related, i would make sure your blood pressure is ok, and make sure you arent having some type of seizures. I would definitely get that checked out more. Also, don't mention the family history to your doctor if you dont have all your life insurance in place.

I am so sorry for what you and your Mum are going through right now - it must be a very stressful time dealing with HD and lymphoma. I would think if you only just started to have blackouts and uncontrollable jerking and headaches etc, then it is more likely stress related. If it were HD related, I would expect it to be a slow buildup of symptoms over several years.

HOWEVER, and this is where it gets tricky, it does seem to be possible for HD symptoms to start from a traumatic event such as a car accident or death of a child/spouse. This is still an unresearched area of HD, and much debated by doctors and neurologists. My sister had a car accident with several epileptic like seizures following, and very serious migranes. She went through a neurologist and had an abnormal MRI that could not be explained by the accident (with spinal injury) or epilepsy - we did not know HD was in the family at the time. Nearly 10 years on, now 40, she has tested positive to HD, CAG 42, and considered early stages with 'soft' symptoms of mood swings, anxiety, delusional thinking, severe depression and failing finger and foot tapping test. She still suffers from serious migrains. It is possible that the car accident triggered HD onset, and we have also been told that HD may have even triggered the car accident (blackout, seizure, concentration lapse?) This is indeed a huge problem with HD - second guessing every incident from our past, trying to untangle the mystery of what is HD related and what is not.

My Dad also had a 'blackout/epileptic like seizure' many years before he was visibly symptomatic, and had problems 'blacking out' while driving and sleeping. At the time we did not know about HD, and assumed it was from driving far too many miles on holiday. Now - we just don't know if HD has anything to do with this or not. My neice is now having some seizures, and we hope and pray it is only epilepsy, and not early symptoms of JHD. That would be our worst nightmare! We have been reassured by doctors and other HD 'experts' that blackouts, headaches and seizures are not the 'first' signs of HD, but we won't really know for sure - and maybe never will!

Testing for HD brings about many serious implications, ones that you may not be able to deal with in conjunction with your mothers current health issues. Many can't deal with HD testing when it is the only crisis they are dealing with, so think carefully before you decide to proceed any time soon. If these symptoms are causing you more stress and concern than a positive result would, then go ahead and start the process. You can always stop the testing at any point in the process. Make sure you have your insurance and other things in place first, and have lots of support and counselling. I would even go as far as get on an anti-depressent before testing - I tested negative for the gene, but even a negative result is still a life-changing experience with a roller-coaster of unpredictable emotions!

HD or stress, it is still not a good thing to be going through, so please look after yourself and try to minimise the stress around you. Take time out for yourself, get some counselling, regular exercise, heatlhy diet and adequate sleep. They have all proven valuable in the fight against HD and stress so it can't hurt - well the exercise part does hurt!!! Keep us updated on your journey, and I wish you all the best for a negative result! Take care, Shy

For my peace of mind, I'd like to see you test for other things for now that might be causing the blackouts. More immediate problems other than HD. I think blackouts in HD at what I would presume would be an early stage in you would be quite rare, and just because you are at risk for HD doesn't mean you couldn't have something else. PLEASE go to a neuro and tell him about the blackout and have an MRI or cat or SOMETHING as I'm NOT a doctor and have an expert look into this for you okay? PLEASE get back to us and let us know how you are.

BTW, I also have been told I have lymphoma, Malt Lymphoma, and I'm doing fine. Malt Lymphoma is kinda rare I think and it was caught during a routine test for my IBS and I should be fine. GO TO A DR PUHLEEEEEEEEEEEEESE, this could be nothing, or it could be something that could be caught early and HEY, you may NOT even HAVE HD!!!

I had a ct scan today and it came back abnormal so I am scheduled for a MRI tomorrow they would not tell me any more then that I guess I will just have to play the waiting game... so much for minimizing the stress level



Edited 2 time(s). Last edit at 02/23/2009 03:20PM by mjgarcia.

Well, it is good that you're getting some tests done, and i'm very glad you don't have to wait long for your MRI...i know this can't be easy, but i think it is very good to find out what is going on for sure. Please let us know when you know more

I am concerned about the CT and MRI results... correct me if I am wrong but can they not tell by deterioration of the brain from these tests
What if I am not ready to know... I know the only for sure why to know is to have the blood tests but if they find deterioration I am only going to think that it is HD... I know I am making more out of this then I should since I don't even know if I have the HD gene or not (I really hate not knowing) but I can't help but worry... I know I just need to relax and wait until I have the MRI and find out the results. but I can't help it I have all these what ifs running through my brain. sorry I am just babbling now So I will sign off. I will keep you updated. thanks for all the great advise

MJGarcia

No you're not babbling at all, and i sure can understand your worried. The thing is, blackouts are not a good thing. Whether it's hd or not, my bet would be it could be something else causing blackouts, and i think really important to find out what so it can be treated. I don't think early stages of hd usually show damage in mri's, from what i've heard others say, and i've been symptomatic for about 6 years now, and have had a ct scan a few months ago for a mini-stroke, and my ct scans are completely normal at this point in time...but hang in there



Edited 1 time(s). Last edit at 02/23/2009 09:11PM by Barb.

I know that there have been some points where I have blacked-out. No matter what anyone else says, I know it was HD related.

My wife had blackouts as well. They seemed to occur because of stimuli such as rhythmic music, noises, flashing lights, or even stress. Some looked like seizures and sometimes, she went totally out. It got worse as she approached the point that she was tested for HD. As we know, many people have different experiences. Docs never were able to determine if they were seizures or from anxiety.

Dave, did the blackouts go away after her testing, so maybe stress related? Or did they continue?

No, they went away when she began taking medication.

Okay now I am really confused the MRI came back normal... still no clue want is going on... I am taking benadryl and it seems to help the jerking as lessened that is until the benadryl wears off. I still have a funny walk and at least once a day I black out. most of the time I am sitting down and just lose a few minutes in time but my husband will not let me even go to the bathroom by myself in fear that I will hurt myself again. And I don't know how long I can keep from going to work. my job is much to dangerous to do blacking out. I go to see my DR again tomorrow I will hopfully find out more. My mind is having a hard time keeping up with me right now this has taken me forever to type so by for now

Have they done bloodwork on you to rule out other things? And checked your blood pressure? And there is a test for seizures, where they hook electrodes up to your head and then flash lights and things.



Edited 2 time(s). Last edit at 02/26/2009 01:09AM by Barb.

Blood work is the first they did... see I am a diabetic and have thyroid problems but all the tests came back okay... they even checked for all kinds of infections because they said sometimes infections can cause you to blackout. my blood pressure is fine. I usually run a little low but with in normal range. They have me on a small amount of blood pressure med. to protect my kidneys from the diabetes but I have been on this for 5 years or so. they did check to see if my blood pressure was dropping to low when I stood up but it was normal. No... No tests for seizures

i would ask about being tested for seizures then, maybe a good idea, get some rest now

It sounds way too sudden for it to be HD symptoms. I agree with Barb, check for other causes first. And be careful not to drive or swim in case you black out and harm yourself or someone else in the process. Take care, Shy

My daughter had a few blackouts in the early years. She once told me her head felt fuzzy just before passing out. We never did find the cause for them but they stopped after a while.