Headaches

[Tazwaz]

Do you get tension or pressure headaches with dizziness with ataxia

[Ataxia123]

Yes mostly in the

Mornings

[ddmagee1]

Yes, I get so many headaches, from different causes, so I don’t know where to start. Suffice to say, that a causal factor for me, is an enlarged artery, attached to my brainstem, that’s pushing on nerve roots, going into my cerebellum, causing Cerebellar Ataxia. The headaches can be bad! My dizziness has caused falls, and balance difficulties. My condition is inoperable. I’ve never been able to have the balance to ride a bike, or go roller or ice skating. Before the Docs found out, what my problem was, as a child, I was made fun of, because of the way I walked, and, in gym class, the other kids were merciless, in making fun of me. I couldn’t run a straight line, and couldn’t even mount the balance beam, without falling down. The most tragic part of all this, though, is that my own parents rejected me and made fun of my clumsiness! So, yes, I’ve had headaches and dizziness etc. my whole life! Somehow, though, I've made it through to being 75 years old! A few years back, to make things worse, I was diagnosed with Parkinson’s Disease. I am no stranger to living with adversity! Good luck, to you!

[glenandgerry in reply to ddmagee1]

Bless you........just keep on keeping on!

[wobblybee]

I’ve seen lots of posts from people diagnosed specifically with EA2..they frequently experience migraine headaches

[cocoa]

When I went to the ataxia clinic, I gave a long list of all my symptoms to the neurologist. Headaches were included in the list.

I was told by the neurologist not to blame everything on ataxia, so I started research myself.

1) I went to a nutritionist and changed my diet.

2) I paid to see a private GP .. he suggested B12 injections. Now I have just managed to get my local neurologist to prescribe B12 injections on the NHS. This has taken years and a lot of determination on my part.

p.s. I take no medication. I rarely get headaches now but still have ataxia.

[Tallguy101]

Before I was prescribed Propanalol 20mg by my neurologist, I was having headaches 4-5 times a week. Since I have been taking them, I now only get one 2-3 times a month. It's usually a migraine which I take Sumatriptan for, it's the only thing that works for me. Co codamol etc doesn't do anything. The Propanalol just slightly takes the edge off at that dose and is a godsend.

[Driven1 in reply to Tallguy101]

Always get your doc to tell you about side effects dakotatrauma.com/anxiety/pr...

[Tallguy101 in reply to Driven1]

Thanks for the link, I did read it but found it was largely irrelevant to me as it hardly mentions beta blockers as headache preventation but seemed to focus on anxiety. But it was interesting, thanks.

[Guardsman68]

Hello Tazwaz

Yes headaches can and are so debilitating for those who suffer from them

I have a type of primary headache syndrome called SUNCT with injection and tearing these are side locked unilateral stabbing burning and electric shock type pain I get on a bad day probably 200 of these which last from 10/15 seconds to 5/6 minutes a day which can be absolutely brutal. All left sided they are around my forehead left eye all the way down my nose and cheek to my top lip. Trigeminal neuralgia of VI & V2. I’ve had mostly everything known for this I’m now at moment on lamotrigine 400 mg a day but not working. I have a lesion in the cerebellum which has entwined itself around 6 cranial nerves and compressing the cerebella artery.

I really hope you find some pain relief that can help you as along with everything else Ataxia throw’s at us headaches are brutal.

Keep well

NO SURRENDER

[penelope2]

Hi, I had severe migraines and headaches for 20 years prior to ataxia symptoms. There seemed to be many triggers but i was not able to pinpoint anything. It really effected my quality of life, having 1 to 2 a week so spent 1 or 2 days in bed not able to function at all. Headaches in between. Also had IBS for most of my adult life and now ataxia. Had a "wake up and smell the coffee" moment and thought there might be a connection. Of course it took my own research and searching for answers as it was beyond the comprehension of doctors and neurologists to look holistically at the person. And the answer that tied all the conditions together, gluten. Of course I was tested for coeliac disease but it was negative so still the doctors don't believe it. Non coeliac gluten sensitivity is very much not believed generally by health professionals. If the test doesn't prove positive then it can't be!!! Except the Sheffield ataxia clinic who say these conditions often go hand in hand.Considering the migraines started in early 20s, now in my 60s I have been the most of my life struggling with poor health. Well the point I was getting to is, I'm not suggesting that this is your problem by the way, but be proactive, think outside the box, because doctors won't.

And I have dizziness too, maybe the ataxia or/inner ear hypofunction, it might be caused by a virus, considering my immune system was shot to pieces by the gluten this maybe the reason. Again no connection made by the health professionals. Sorry about the rant but it is a real mission of mine to enlighten sufferers and so question their doctors. My goodness the doctors need it!!!

Good luck.

[Buffergirl in reply to penelope2]

That is all so remarkable and well done for being so persistent. For a long time I have had my doubts about gluten although I'm afraid have done little about it. I remember meeting someone with Coeliacs about 20 years ago and thinking that, if gluten is so poorly tolerated by her, why shouldn't all of us be somewhere on the spectrum? When I developed ataxia I also remember watching a You tube video of someone walking before and 6 months after being gluten-free and still I did nothing because I believed in my tests. I am now eliminating it completely from my diet and you and Cavin Balaster are definitely the inspiration for that. Dairy and particularly yoghurt is proving a little more difficult (I was so hungry and a little concerned about ketosis) but I have dramatically reduced and I will never go back. You're right about the medical profession. The 3 things important for life are breathing, food and water and yet their training completely marginises these essentials (nutrition less than 24 hours) and still they don't listen...........