severe headaches, My story

[FreesignerRichie]

Hi everyone.. Firstly I want to apologise for this long post.

I guess it all started roughly 16 years ago and to this day, for me 2009 only had 363 days I day as completely gone from existence. The symptoms I experienced then and still continue have are, severe headaches everyday which only increase, my controllable ones are tension and mild migraine. Shooting pain which start from between the shoulder blades shoot up the left side of back of neck then into the head feels like electric shock, sharp stabbing pain then across the back of head. Strange sensations from head to toe for example touching left side face, the sensation is on right side. I know I’m weird right.. lol! Anyway back to these symptoms vertigo and dizziness, nauseous, constant room spinning, blurred, double and triple vision. Tingling and pins and needles, severe tinnitus ( ringing, buzzing and clicking in the ears ) and balance problems walk as if I’m drunk. Weakness on the whole right side. And many other symptoms, everyone thought I had a stroke including the ambulance crews, I was admitted to hospital and all scans: CT, MRI, MRA came back clear, which is of course good news to hear that no stroke was there. I had lumber punch, EEG, again these were clear. Neurologists at that time told me that I have chronic migraines and prescribe me all types of antidepressants, amitripaline, nortripaline etc sumatriptan, etc nothing seemed to touch these headaches. So I stopped taking the meds.

so for nearly 15 years I have managed and and tried to control them which is very difficult to say the least, I’ve tried various pain management, CBT therapy, emdr therapy these again have not helped me either. Then last July I was admitted again into hospital for suspected stroke again this time a whole lot worse compared to 2009, I could not communicate at all as my vision was completely blurry, my speach was slurred, weakness again on whole of right side, I couldn’t write, I couldn’t use British Sign Language either. Again ambulance crews and nurses including several neurologists strongly suspected a stroke but again all tests clear. I was in hospital for 2/3weeks, pain medication was morphine paracetamol, antidepressants. But nothing touched these headaches. The neurologist told me that I have FND, demyelination disease, chronic migraines, referred my to a different neurologist who recently diagnosed me with Hemiphlegic migraine, Vestibular migraine, Ocular migraine and silent migraine. He also said that demyelination disease is not present. And don’t know what the shooting pains are but I need more tests. I again am taking meds gabapentin, which I have been told to take maximum dosage 900mg, paracetamols,ibuprofen and aspirin on a bad day. But I have 4/5 bad days so I guess I’ll be walking round and looking like a zombie.

I am so sorry for this long post.

I wanted to ask and see if anyone here as had similar symptoms especially the shooting pains.

I have been doing some research and come across occipital neuralgia which has made come here.

[CatsandCars]

Hello and welcome, FreesignerRichie, although I'm so sorry for the reason. You've been through so much. I haven't had much experience with headaches, so I'm not going to be of much help. I have had occipital headaches, and my pain doctor gave me a few injections (he called it a nerve block) and it went away.

I hope someone with more experience with some of the same headaches will weigh in. I hope your doctors will be able to help you get some relief!

[FreesignerRichie in reply to CatsandCars]

Hi, thank you for you honesty and your view it’s appreciated.

I don’t judge at all, especially after what I have gone and continue to go through, or should rephrase that by saying what we all have experienced or are going through with similar symptoms.

I will do more research on occipital headaches/nerves and hopefully have a discussion with my doctor about it and nerve block.

Thank you again.

[CatsandCars in reply to FreesignerRichie]

You're welcome. There was another member who had an awful time with occipital neuralgia who didn't need to resort to nerve blocks. Hopefully, she will weigh in, or I can try to find her posts for you.

[FreesignerRichie in reply to CatsandCars]

Oh really! Hope she is doing well and managed to get some form of control management. Yes please that would be useful.

Thank you

[Frances_B]

I can see that you've uploaded the same post in the FND group and a very similar one in the Migraine group, so I'm curious as to why you've posted in the Multiple Sclerosis forum when the tests you've had on several occasions and ordered by several different doctors have shown that you don't have MS but various types of migraines and possibly FND.

Given your issues with vertigo, dizziness, nausea, balance, tinnitus etc you might do better to ask your questions in a Meniere's group.

[FreesignerRichie in reply to Frances_B]

Hi Frances_B, thank you for your reply. That is correct I have posted similar in various groups. The reasoning behind this is that reading what everyone’s symptoms and experience so on and so on. I can relate to 98% from what I experience and my own symptoms. I do understand that everyone is different and that includes symptoms etc, but I’m not looking for resolutions or a self diagnosis, I’m not even looking for any answers. Because I’ve already come to accept whatever is wrong with me, that’s me and I have to live with it, of which I’m already doing and I’ve accepted that. It’s just recently as it’s been nearly 6 months since my last hospital admittance, I’m still recovering and not fully back to 100 % fitness, which as me concerned to say the least. So I thought about searching for groups that are similar to myself. I trying to build as much as I can, so I can have a lengthy conversation with my doctor, so that they can refer me to have the relevant tests. Otherwise I will search for a private diagnostician in the US to get the right form of treatment etc. because here in the UK nothing is working.

[Frances_B in reply to FreesignerRichie]

If no demyelination has been picked on your MRIs then MS is extremely unlikely.

Note that multiple symptoms experienced at the same time can have multiples causes at the same time, however often symptom groupings can lead in various directions which may provider answers. I suggested following up on Meniere's disease because I had a friend who suffered for years with a bunch of symptoms similar to many of yours i.e. the ones I mentioned (not including the stabbing pains though), and he was eventually diagnosed with Meniere's. MRI is one of the tools that can be used to help diagnose Meniere's if the radiologists are looking for the right things. Meniere's can't be cured but it can be managed to reduce its impact.

hopkinsmedicine.org/health/...

You have also had a neuro suggest FND, which is also worth your while following up on - it also generally can't be "cured" as such but can be improved and managed, and it could account for quite a few of your symptoms such as the sensation issues etc.

[FreesignerRichie in reply to Frances_B]

Thank you Frances_B,

That is interesting and not yet looked into menieres, but now you and several others have mentioned that, I will definitely look into this.

I was not saying that I have MS, but I have huge number of symptoms that MS is 1 possibility, when I was in hospital in July the neurologist told me that they thinking have demylinting disease, no more tests was given to me.

I will be having in depth talk with my neurologist again soon, so hopefully I can get somewhere, but I shall see. If I’m not happy or feel that I’m not being listened too than I will look at private neurology or go to America for a diagnostictcian.

[Frances_B in reply to FreesignerRichie]

In your original post you wrote "The neurologist told me that I have FND, demyelination disease, chronic migraines, referred my to a different neurologist who recently diagnosed me with Hemiphlegic migraine, Vestibular migraine, Ocular migraine and silent migraine. He also said that demyelination disease is not present", and you said that all the most recent tests done in July last year were clear for the various things that were being considered, including MS. If the first of those neurologists suspected a demyelinating disease an MRI should have shown it.

There are other diseases which share multiple symptoms with MS and that has a lot to do with why MS is a hard disease to diagnose - it is a diagnosis of exclusion i.e. when all the other possibilities have been ruled out then MS is "what's left", however, with clear MRI scans it's extremely unlikely to be MS.

I'm aware that, like health systems worldwide, the NHS is stretched to its limits, however I think it unlikely that spending a bucket of money to travel to the USA and to try and access their health system privately will do anything except reduce your bank balance by a very significant amount of money. Some of the best MS experts in the world are in the UK so going "private" in the UK is probably a better option.

[FreesignerRichie in reply to Frances_B]

Thank you Frances_B, Firstly I don’t mean to confuse you with what I’m saying so apologies for that.

I have seen so many neurologists who diagnoses with one thing, then the next says completely and diagnoses with something else. Not 1 neurologist corresponds with or supports the last neurologist. So I can not trust any neurologist atm. At the end of day each and everyone one of us knows our own body better then these specialists, so with that in mind they should be, you would think that they would listen carefully and take everything on board before deciding it what we call a “mystery “ if they don’t have a diagnosis.

That goes for the same with mental health. As I have more labels then a stationary cupboard. But that’s a separate and different story.

That is very true with the USA, and I do hear and understand what your saying, I don’t think their is much more I can do has the options are reducing.

For myself and more importantly my family it would be nice to have a treatment in place, because without my family struggle to cope which is understandable from their point of view

[grammyshay]

Praying for you. I am so sorry that you are experiencing these things.

[FreesignerRichie in reply to grammyshay]

Thank you grammyshay. Hope your doing well too, or should I say hope your doing the best you can be.

[grammyshay in reply to FreesignerRichie]

I am decent right now. With both of us feeling okay at the moment, it is kinda scary. Just peeking around the corner... Just waiting for the wham!

No, we are good. My Secondary Progressive Multiple Sclerosis is at an even lull right now. My Migraines are mostly controlled. His Relapsing Remitting is doing well. We are good. ♥️

[stepsforNeeC]

Hello and welcome FreesignerRichie, I have some of the same symptoms; diagnosed with MS Remitting/Relapsing in 2008. Yes, “brain stabbing “ migraines that feel like someone is poking inside my head with a knitting needle! I also have pins and needles in left foot. Medications help, but don’t irradiate the disease. If you’re up to seeing another doctor, please identify a neurologist who specializes in MS, take any CD’s you have with you. Prayerfully you can get some answers, medication that works and get on the road to feeling better! Blessings and prayers. NeeC

[FreesignerRichie in reply to stepsforNeeC]

Hi stepsforNeec, thank you,

My word I don’t know where to begin with those brain stabbing or electric shock pains, there are so disturbing, they happen more frequently with me has it as now come that I can not have anyone on my left side at all, if I do I’m in agony with the amount of activity of pain I get.

Im not saying that I have MS, but I do have a lot of symptoms that’s very similar or the same as MS.

[stepsforNeeC in reply to FreesignerRichie]

Pray that you get definitive answers and more forward to a level of relief 🙏

[CatsandCars]

Posts

This member had some different problems from you, but there were some meds in there that might be worth asking your doctor about.

It sounds like she was also prescribed something like Tylenol 3 without knowing it was an opioid, which is horrible. Just from personal experience, opioids have never helped me with headaches.

healthunlocked.com/mymsaa/p...

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[FreesignerRichie in reply to CatsandCars]

thank you I’ll have read on these. Yes I will be having an in depth conversation with my doctor.

[2ksgrammie]

Hi there, I also have had occipital headaches and I still do once in a while? They are awful. I have had nerve block injections for them that have worked. I am currently getting Botox injections for my migraines and my Neurologist said that will also help with the occipital headaches. I have been getting the injections for several years and they help a lot! Have you spoken to your Dr about that?

[FreesignerRichie]

Hi 2ksgrammie, tbh with you I have never heard occipital headaches. It was on here and some research I have done myself, especially with strong symptoms that suggest this. No my neurologist or GP or neuropsychologist, nor the specialists at my headache clinic none have said or even mentioned occipital headaches or anything. But all I know is that they are taking over and out of control at current nothing is working. I’m just trying to battle through the days, which is extremely very difficult. If I would say my headache pain right now is about 10/10. I will bring this up at my next appointment. Thank you I will look into these injections

But to just let you know that I’m ok honestly.