New to zombiehood

[gladys45]

Hi there, don't know who else to ask. In Feb this year I had a stroke, completely out of the blue..or so I thought. After teaching myself to read again as well as lots of other silly everyday things like where do I keep the cups in the kitchen and how to use the microwave, how to ride my horse, I accepted my "new me". On my hospital discharge the Dr told me it wasn't a stroke, it was a migraine.

I was rushed in to resus and thrombolysed, ended up on the extreme end of the stroke ward with 24 hour care...and it WAS A MIGRAINE!!! Still life moves on and I got back to life or the new version

Fast forward 7 months.. I've just returned to work after spending 5 day unconscious in bed after having another migraine. NONE of the meds I have been given work, the Propranol type stuff turns me into a zombie with extreme nightmares, and the sumitran (or whatever that pointless tablet is called -We call in sum of nun) is useless. The pain is beyond anything.. the pressure put on my family is immense, I've got to work.

How the hell do you deal with it especially whilst most people refer to it as "just a headache"?

[MaryF]

Hi, it is terribly important that you are tested for Hughes Syndrome/APS, you GP can do the tests but do them at the hospital! As the samples taken are time sensitive, this is an autoimmune disease which improves considerably with a) the right medications, and b) the right specialist with a working knowledge of the disease. Let me know where you are located and I will give you a list, here are the blood tests,

Neurologists do at times dismiss this condition with dangerous results!

Lupus anticoagulant.

Anti-cardiolipin.

Beta-2 glycoprotein I.

MaryF

[Aberlass in reply to MaryF]

This is facinating. Do you have info for Lancashire please?

[MaryF in reply to Aberlass]

Yes, I do, please don't be confused about the name of the first test, it is not a test for Lupus, it is for Hughes Syndrome/APS:

Specialists in your area

Finding a specialist

Antiphospholipid syndrome can cross a number of medical disciplines and the type of specialist you see will depend on your symptoms; for example, you may see a neurologist if you have epilepsy or an obstetrician if you are pregnant, but usually, the type of doctor who specialises in APS is either a haematologist or rheumatologist.

Finding expert medical care in your local area can sometimes be difficult, and one of the most common queries our charity receives is from patients looking for APS specialists who can treat them.

Thanks to other patients supplying and sharing their information, we are able to provide this unique UK directory - just click on your region below to see the specialists in your area. If you think we have missed a doctor out, do let us know. Please remember that all referrals must be made through your GP.

North East Specialists

NHS Specialists

Dr Bridget Griffiths

Consultant Rheumatologist

Department of Rheumatology

Freeman Hospital

Freeman Road, High Heaton

Newcastle-upon-Tyne, NE7 7DN

Telephone: [phone]

Dr Richard Reece

Consultant Rheumatologist

Department of Rheumatology

Darlington Memorial Hospital

Hollyhurst Road, Darlington

County Durham, DL3 6HX

Telephone: [phone]

SYMPTOMS: In pregnancy, APS is the most common, potentially treatable cause of recurrent miscarriage, and is also associated with other complications such as pre-eclampsia, low weight babies and stillbirth.

Some people are affected by symptoms more than others while others simply have the antiphospholipid antibodies (aPL) in their blood but do not develop any blood clots, experience pregnancy complications or display any symptoms at all. As of yet, we simply don’t know the reason why these anomalies exist because so much research still needs to be carried out.

The typical low-grade symptoms of APS are:

headache and migraine

memory problems

dizziness and balance difficulties

visual disturbances

blotchy skin (livedo reticularis)

arthralgia

fatigue

The common acute events caused by APS are:

thrombosis – DVTs

strokes and mini-strokes (TIAs - Transient Ischaemic Attacks)

heart attacks

pulmonary emboli (blood clots on the lung)

recurrent miscarriages

MaryF

[Aberlass in reply to MaryF]

Thank you

What is the name of your charity? Do you have a website?

[MaryF in reply to Aberlass]

At the moment all information is on the forum, pinned posts on the right hand side, however in the future we may have a website, we are fully supported by a number of medical professionals, join our forum as well as staying on this one. MaryF

[Cally01]

Oaft!!!Gladys45 what a nightmare it is!! Sumatriptan injectionschelp me the most and Zomig melts but i avoid them as much as possible.

Had ALL prevention meds / triptans and the only way to live was to take triptans far too much.

Recently went to a herbal doc (recommended by my gp) she is definitely helping more than taking tablets.

It's been a 3yr stuggle with daily headaches which escalated to migraine and yip i did have days were i just wanted to give up!!

There's more to this herbal stuff than meets the eye, never gave it any room before but if i took this route 3yrs ago I'd still have my job / life.

Good luck on your journey 💖

[birdie in reply to Cally01]

Hi Cally, what did the herbalist advise?

[Cally01 in reply to birdie]

Hi birdie I had a consult which lasted 45 mins, wrote e a list (massive list) of all triptans, prevention meds and pain relief (including oral morph)

I'm also getting flushes and hormone migraine ( I get 3 types, aura, jaw migraines due to no cartilage and locked jaw and hormone migraines)

After a full history she made me a cream to rub anywhere that hurts, honest to gawd!! I always thought it was all hocus pocus but to my amazement it's working!!😱.

I hardly use any cream , there's no smell, nothing menthol or mint, it soaks right in and works!!

No pain meds since Friday.

I manage my jaw ones with ice packs and that works in a couple of hours but their putting 25units of botox in each messeter (think thats how you spell it lol ) jaw muscles.

Honestly wish i looked into this 3yrs ago!!

Might still need a jaw joint replacement in the future but OMG no persistent headache is good for now 😆

[birdie in reply to Cally01]

That's great the cream's working and therefor getting a rest from pain meds. Wishing you the best outcome 🤗

[Cally01 in reply to birdie]

Thank you birdie 💖

Be well 😆

[Val135]

Hi Gladys45, I went through a similar situation 2 years ago. I was eventually diagnosed with hemiplegic migraine . I now take Topiromate which seems to help although I have never had a day without a headache since the first attack. I had to take medical retirement from a job I loved. The only relief I get from the pain is when I go for my daily swim and a walk in fresh air.

I understand how you are feeling and it is not 'just a headache'. It is a life changing experience that is hard to come to terms with. I hope you find ways of dealing with the pain. It will take time and life style changes and trying new things to find what is best for you.

[Roama]

I was given suppositories once and they helped for cluster head aches

Also heard that you can have injection to help stop migraines of sorts and know that acupuncture helps a lot