Does anyone else suffer fromm really gad hemoplegic migranes where you go paralysed all of a sudden on one side. They gace gotten so muchvworse since my gammaknife if anyone else suffers from them is there anythibf i can raje thats safe ti stop hacinf them so far most migrane meds increase the risk 8f hacinf strokes and with already gad one and still at high risk its not something i want to take a chabce on. Any advice id really appreciate it.
Hemiplegic migraines, like with many migraine diagnosis, can have a large range of symptoms. In mild cases there can be pain down one side of the body and in more severe cases paralysis, as you describe.
I often get mild, very mild, hemiplegic pain. Initially, post surgery, the theory was that the pain which seemed to radiate from my head was a dental issue, so they removed all of my top teeth. The pain continued. It was not my teeth. I was referred to another neurologist, he came up with a couple of differing pseudo diagnosis, trigeminal neuralgia and cervical dystonia. He had me take all sorts of medications. I was up, I was down, I was all over the place mentally, it was horrible, but my symptoms continued. He diagnosed complex migraine. He then went on to tell me about this marvellous treatment that was available, Botox, and how it had worked wonderfully for other patients.
So, I went through his treatment regime of 50ish shots in my face/forehead, neck, back and shoulders every 3 months for 9mths, but there was very little benefit for me. The neurologist was adamant, it wasn’t the surgery causing my pain/symptoms. He told me, rather firmly, " The brain has no pain receptors, so the pain isn’t actually from the brain…" Personally, I didn’t really care for his theory, my head was ready to explode with the pressure/banging headache. I needed a ‘fix theory’, not a ‘source theory’. His theory was that the source was muscular tension, hence the Botox and if his theory was correct, the Botox would have benefitted in lessening that tension. Because there was no benefit he turned it around and said to me “Well, it’s worked for others… …It must just be YOU”. I know for some patients Botox has had some amazing results and if muscle tension is a contributor, then it can work well. But for those of us who have had neurosurgical procedures, it may not have the benefit.
Now, before I write the next bit, I want to qualify everything in saying this is NOT medical advice and is ONLY my own personal experience. Medication interactions is a serious matter. Anybody considering this route MUST discuss such matters with their respective medical teams.
Something that has assisted me personally has been medicinal cannabis. Some people will swear cannabis has been their magical cure and although it has benefitted me, I would NOT be calling it my magical cure. It has assisted in me cutting back on the opiates, which is a plus, as the opiates mess with my insides. I don’t find cannabis to be a ‘painkiller’ as such, but my pain is front and centre most of the time. With cannabis my pain is still there, but I can put it to one side and still function, somewhat. I find I do still need an opiate, but at a much lesser dosage. For some people the paranoia that cannabis can induce can be overwhelming, but there are some low THC, high CBD strains available which can reduce that overwhelming sense. (it’s the THC which gives that ‘stoned’ feeling).
I did not have gammaknife, but a craniotomy. It is my understanding that the results from gammaknife can take time to settle and take full effect, but I believe the results from any neuro procedure can be many and varied. I do hope that others with more GK experience can share their knowledge.
Merl from the Modsupport Team
@IGY was talking about this subject just a couple of weeks ago.
My son had craniotomy and a prosthetic PEEK replacing part of his skull. 1 year after the final implant surgery he started having attacks which look like stroke, weakness of limb and lips followed by headache. It is certainly a result of the stroke because he never had this before, unfortunately there is no literature associating hemiplegic migraine with stroke. You need to talk to a neurologist and hope they know about this. Praying for you
Hi Sophie, I hope you are well.
I just started to suffer with these the last few weeks, I am about 14 months post gamma knife. My left side was affected . I also had blurred vision only in left eye, headache and felt disorientated. During the last one I had (last Friday) the symptoms on left side of body were that bad I went to A&E (thought it could be a bleed). Anyway, after a scan was told no bleed but also thr is no change in size or extent of my AVM and that I have several enlarged vessels. I am really disappointed it’s not shrinking yet, I thought the symptoms were indicative that treatment was working.
I have an appointment with a neurologist beginning of September. I will post back after this and let u know what I am advised regarding medication.
Is your AVM still active or did Gamma Knife work?
Wishing you the very best.
I’ve had a few hemiplegic migraines in the past. The last one just last month. They always peak my anxiety because they feel like stroke like symptoms. When I do feel the tingling on my affected side and sudden heaviness/ unable to work that affected side when I am pretty far in my recovery that I am able to work it (in my opinion) rather well, I know one is happening. The first thing I do is sit down and take slow deep breaths. I take Tylenol and just wait till it passes. If it’s taking a bit to pass I call it a day and go to bed because the anxiety is just too much. This is by no means medical advice. And you should talk to your doctor and go by what feels right for you. For instance the calling it a day in a bad case of my hemiplegic migraines feels right to me in a bad case of them because I’m asleep and not thinking about it, until I wake up and hope I’m ok. I’ve passed the 5 year post embolization and craniotomy mark and I’ve graduated from angiograms though and my neuro team has reassured me my avm is dead and will not come back so if you’re not this far down I can’t 100% recommend my method of dealing with them because at the end of the day, it could be an emergency and you might need to go to the ER. But short answer that is what works for me and I hardly get them anymore. Oh but when I do, truth be told I cry myself to sleep when I’m sleeping it off. Call it trauma from this whole avm process or just how high my anxiety gets.