Type 1 Help please so so frightened

[michelle lilly]

Hi don't want to bother everyone by going into my past history, so I will do my best to tell you the short version(not likely ha ha sorry).
I am type 1 brittle diebetic aged 48 with very bad control I have tried everything the doctors have suggested but nothing has worked, eventually it always ends the same with the doctors giving up trying and pass me onto other doctors this has gone on for nearly twenty years.
I live in France with my two teenage daughters who are my world, I also have two children who are grown up married and living back in England it's because of them I haven't given up and keep fighting, the constant battle of infections such as pneumonia which I have had five times and has left me with COPD due to going into respiratory arrest the list of problems is sadly very long.
I have no medical support here no check up clinic's or nurses to help with daily problems only my hospital check ups which are completely useless, my Last appointment was horrible my consultant a professor, told me he was very sorry to say that he can not understand my complex diabetes, and the possible pancreatic graft would not be happening (thankfully he is wrong about this as I have received a letter from the transplant team asking me to go into hospital for extensive testing so fingers crossed),
I got very upset with tears running down my face when he said what is wrong with you it's not my fault I did not inject you with diabetes! Then announced he was sending me back to the local hospital, where I have already been for a number of years who could not help and sent me to the larger hospital and to the professor who I had been seeing for four years or so.
I have a list of complications and I take lots of medicine, I also have a diabetic pump, I see a nurse for this once a year,
Sorry I have gone on so much it just feels so good to write down and tell people who understand.

My question is I have suffered this week two very very EXTREMELY PAINFUL episode's of head pain that came on suddenly, the first one happened six days ago I felt my usual self may be a little moody due to my normal body pain,
I was making a cup of tea when I suddenly felt sick and had to run to the loo, were I vomited, seconds after I was struck with the most horrendous pain in my head that made me scream thankfully it only lasted a few seconds may be twenty although at the time it felt longer it was like I had been shot in the head, ( I am not normally the type of person who would scream very weird for me) it was all over my head not just in any particular place the pain made me grab my head, it's very hard to describe just how bad it was, the pain stopped as suddlenly as it started although I was very shaken up and had to lay down were I fell asleep for about an hour. I felt very odd and confused and very aggressive afterwards, then the next day I was ok ish!
I did think at the time to go to hospital but have had so my bad experiences I didn't go.
Then last night after having a bad day with my normal health problems and also waking in the morning very angry for no reason, about 8pm I felt the sudden need to be sick, but although I was wretching nothing came up.
Then the explosive pain came but this time it felt stronger even than before which I would never of thought possible, it lasted longer than the first may be 45seconds which doesn't sound long but when the pain is so severe it really is,
I was screaming again shouting for help and thinking that I was about to die! I can not explain how terrifying it was, I know I should of phoned a ambulance but I was also lone and crawled into bed and fell asleep.
When I awoke I felt like I was a bit drunk and very worried about what had happened again but otherwise seemed quite normal, so felt worried about going to hospital and them thinking what a time waster, I know I am being stupid but the local hospital is not very good but there nowhere else.
I have made an appointment to go to the doctor tomorrow, I spoke to him before and was hoping deep down that he would send me to hospital,but he said to go an see him tomorrow.
Concerned that I will not be able to get a cross to him just how bad it was,the language barriers don't help although he speaks a little English and I speak a little French.
Has anyone ever experienced anything like this and what do think it could be, I have read about headaches called thundercap and it sounds the same but that means they could well be a bleed and it could be very serious.
I am hoping someone has a better possible cause as I am now terrified it will happen again and I don't want to think what could happen.
So so sorry for going on and on but it feels better after writing this experience down THANK YOU
This has turned into a long long book SORRY

 

[azure]

Sorry you're feeling unwell and have been in so much pain. It must be frightening.

You're doing the right thing seeing a doctor. I hope he has some suggestions about what might be causing the headaches and nausea.

Do update us on what he says, and take care of yourself.

Best wishes,

Azure

 

[michelle lilly]

Thank you so much for your kind thoughts it's appreciated,
It's nice to know there are people out there who care

Best wishes
Michelle

 

[copey399]

That does sound very frightening @michelle lilly. I don't envy you trying to explain it to a doctor, especially a foreign one but I think they should refer you for a scan just to be on the safe side. The only similar thing I have had is Migraine but I've not known it to come on so suddenly or go off that quick but there are all sorts of different migraines that affect people differently. I feel sad at how worried you are feeling but hopefully you can get some answers to put your mind at rest.

Please come back and let us know how you get on. xxx

 

[michelle lilly]

Thanks I will let you know how I get on tomorrow, still awake to sick to sleep sugars are all over the place and when I eat just a bit get stomach ache think it's stress, learning lots of new stuff on here though never heard of Lada, t3 or t4 really interesting feel a bit daft not knowing this stuff could you help me understand what is DAFE ect

Cheers and thanks
Michelle best wishes

 

[donnellysdogs]

Yes, there are a form of bleeds that can affect you like this. I have previously over a number of occasions.. Only 3 had pain like you describe and thought nothing of going to hospital. Afterwards I did recover and was what I thought ok.

It seems now that I have well formed haemangioma in my neck. Personally, if this is correct.. Waiting on CT scan to rule out secondary cancer.

My surgeon said the round formed lesion may have been there years...and this is how long ago they started. Only 3 occasions of the type of pain you are describing. I have never forgotten the 3 times. If it is as my surgeon believes it is inoperable for me.

Please ask for medical help. Whether it turns out to be migraine or something else it does need to be logged and investigated. I can personally recall the 3 odd occasions of these literal poundings occuring in my head..I literally ended up on the floor in a heap thinking I was going to die and my head exploding. It was so painful and sharp and pounding I literally couldn't move off the floor.

I believe now these episodes have contributed to my problems now. Please seek further help....I know you don't really have much confidence in your health persons but on this one occasion they may be able to help you.

 

[michelle lilly]

Thank you, it was very kind of you to tell me your experience, and I do believe that the episodes that I have could well be very similar to what you have described, I hope and pray that you are ok, and something can be done for you.

I will let you know how I get on

Wishing you all the luck in the world and hope you will get good news
Thanks again for you replying
Take care

Michelle

 

[donnellysdogs]

@michelle lilly
I hope you can get sorted today. I would certainly ask whether a bleed could be discussed as a likelihood.

Although I have had 3 occasions of this debilitating explosion in my head my bleed well formed lump has been found in C7 of my spine in my neck.
It was found on an MRI Scan and I'm now having a CT scan this coming week.

I can remember the explosions in my head as I've never had headaches etc but they were literally years apart.

I hope you can get something resolved today for further explanation or investigation.

Please let us know how you get on.

Stomach aches can certainly be caused by stress. I too felt totally nauseous whilst under attack with the explosion in head.

Normal haemangioma are the deep red birthmarks that babies may have when born. Atypical hemangiomas need further investigating if found. Most cause no bother apparently but mine is giving horrendous pain and is bothersome now. I just accept whatever to be honest... Can't do anything about it..

Please let us know how you get on.

 

[noblehead]

Good luck today @michelle lilly.

 

[michelle lilly]

Well been to doctors my friend came with me, she speaks perfect French so that was good, the doctor who is lovely and knows a lot about me went on and on about my diabetes which was annoying as he kept saying are you sure you were not hypo or hyper which I know 100% that this was not the cause, as I can have hyper and hypo attacks a few times a day, but he did not take this on board believing it could be a new symptom of the diabetes, or my medication, which is all good I suppose.

He is, however sending me for a mri scan, thank God, the reason he does not believe my thundercap head ache was a bleed is, the pain would not of stopped, but I am quite doubtful about this as the pain was so severe that I doubt that anyone could survive such a pain for than a few minutes let alone a week or so, which was what he said would normally happen, I have checked out this on line and it is possible to have warning bleeds, however a lot are sadly misdiagnosed but I can not find out how long this headaches normally lasts, I did try and explain to the doctor that I was left with a pounding headache which I still have, and today I have felt very wound up again shouting at my children ect about stupid things like cleaning up and stuff meaningless stuff just feel very agitated, my sugars are high though, feel very confused.

Has anyone ever suffered with such horrendously painful head pain due to hypo, or hyper
More concerned about this than a bleed as the doctor repeatedly said well Michelle your diabetes is going to keep evolving with new symptoms, I don't know how I would be able to cope with such horrendous pain on a regular basis, my life would Change completely I couldn't drive again ect freaking out more than before I visited the doctor.

Hoping it is the medicine, I am taking a lot of med, morphine ,lyrica, cymbalta, alprazolam, omeprozole, doloprane, ect however, been on these for years they haven't changed anything or given me any new ones, so confused!

I have also been diagnosed with automatic neuropathy if that makes any difference,
Any ideas or thoughts would be greatly appreciated

Thanks
Michelle

 

[copey399]

I did a post about Lyrica @michelle lilly I was prescribed it and went online to research it because there wasn't a leaflet in the box and there are some horrendous things about it online. It didn't mention anything like your thunderclap headaches but the "being wound up and shouting at the children" and being agitated etc. were all mentioned. Plus people reporting that they suddenly went deaf in one or both ears. There is even a Lyrica Survivors Group on Facebook. I do advise you to research it and decide for yourself if you can relate to the experiences of people on the internet.

I'm glad you're getting your scan and hope it will give a clue to what is causing it xxx

 

[azure]

It was a good idea to take a friend. I hope that made the visit less stressful for you, and at least you know the doctor understood your symptoms.

Great news you're having an MRI. If nothing else, it'll reassure you. I hope you get some answers very soon. Not knowing what it is just makes things worse, I'd imagine.

Look after yourself

Azure

 

[michelle lilly]

Hi guys,
been very sick, ended up in A E Monday night, after I started vomiting again completely out of the blue, lucky no thundercap headache, but vomited for four hours, unable to keep anything down not even a sip of water, started to panic so my 18 year old daughter phoned for an ambulance, after four hours the headache kept starting then stopping just like the sickness, in waves, also very very dizzy, no motor coordination, unable to walk,
it was horrible, when my daughter phoned the ambulance I was panicking a lot, they were useless! they kept asking really unnecessary questions, can't remember what but she was on the phone for at least 30min which is a long time, when you really believe your about to die, they even asked if someone else could take me!
I remember them getting me to hospital, a hospital room, machines, then waking up in a corridor in the morning, nothing else.
Apparently they had taken blood, I slept well (written on paperwork) not confused! How they could tell this if I was a sleep?
Finally, a doctor came around 11am, asked me what had happened ect. I needed an echo of my stomach and head scan, had a scan at 12. Didn't see a single person not a nurse or doctor for the rest of the day. No clue as to what, was happening felt so so poorly and alone.
finally a nurse came around 5pm, told me I was fine to go home! so shocked, told the 2minute scan of my head was fine, and could go. Hadn't had echo plus no explanation, asked to speak to a doctor, he arrived about an hour later.
Told to come back for the echo two days later, as he had found a pulsating mass in my stomach, scan was good so bye bye!
so completely ****** with the hospital, the so called care given.
I was a nurse myself back in England along time ago, so understand the strain of work ect, however, the care given at A E. Alencon hospital is appalling to say the least, a little smile or a tiny word "are you ok" takes no time and costs nothing
Sorry for going on so much, need to get it of my chest.

The echo was ok i think, get results on Tuesday, have another brain scan MRI this time, but thankfully the doctor who preformed the echo said there was nothing serious, thank God, (worried sick for two days)
so there you have it, so far so good, I think, however, still no clue as to what, is exactly happening to me, so still very worried and frightened just pray it stops.

IF ANYONE'S GOT ANY IDEAS OR ADVICE, IT WILL BE APPRECIATED
SORRY GUYS FOR THE LONG LONG EXPLANATION JUST NOT VERY GOOD AT CONDENSING THINGS.

 

[donnellysdogs]

No thoughts on what is wrong, but you could ask for prints of the results of your MRI's / scans etc from your GP. They will all have been sent to your GP hopefully.