Not sure if i had or am having strokes or TIA's

[diva035]

i've had 7 or 8 stroke like attacks in 2 weeks time i have sle lupus i'm 26. i took gabapentin for nerve pain and the next day started having the shakes really bad and more seizures that were harder to wake from cause they were back to back. then later in the week my head and neck started twitching my speech became slurred and couldn't swallow lasted an hour went away. then friday had my first full on attack had a 2 or 3 hour seizure and when i woke up couldn't talk, my face was drooping on the right, couldn't swallow, couldn't move my right side at all, and my writing in the left hand was starting to get sloppy and very hard to think and couldn't open my mouth to eat completely numb. went to hospital blood pressure was 192/100 and was seizing bad they sent me home around 3 am i was able to talk normal and move my arm and swallow writing didn't get better but my right side did.. next day same thing happened writing and thinking worse like my brain was slowing down my speech slurred couldn't move again. next morning my vision was affected the right side was darker and blurry my eye wouldn't open all the way and i was running a fever of 101.4 so went back to hospital did mri said everything was normal but still having these attacks everyday no answers. i'm from maryland and have a ton of health problems before all this started fatty liver disease, scoliosis, stenosis, degenerative disc disease my whole back is screwed up have arthritis in the lower part, 4 or 5 bulging discs, ashtma, seizures, memory loss, auto immune disease, thyroid problems, vitamin d deficient, high blood pressure, low platelettes, problems with cysts, rapid heart rate, nerve pain, sle lupus, vision problems wear glasses, numbness and tingling, weakness, head aches and problem with shoulder and no gall bladder.

[lupus-support1 Administrator]

I am very sorry to read about these serious problems. Although you mention SLE, you don't mention APS/Hughes or whether you are taking blood thinning agents like aspirin, Plaquenil (hydroxychloroquine), coumadin/warfarin/heparin.

Gabapentin (Neurontin) can cause headaches. It can also cause:

dizziness,

drowsiness,

trouble swallowing,

unsteadiness,

memory loss,

lack of coordination,

difficulty speaking,

trouble swallowing

muscle ache or pain,

trouble thinking,

viral infections,

tremors,

joint pain,

change in vision eg double vision,

fever,

feeling faint, dizzy, or lightheadedness,

cold or flu-like symptoms,

coma,

confusion,

convulsions,

delusions,

dementia,

hoarseness.

lack or loss of strength,

unusual eye movements, and

jerky movements.

mayoclinic.org/drugs-supple...

The fact you had a problem soon after taking the drug indicates that your doctor needs to assess whether this is a reaction to the drug.

To be frank, I cannot understand your being sent home from hospital. Your blood pressure is high and your descriptions should be taken seriously. Just because you were able to move your arm etc doesn't mean you should have been sent home, without having blood tests, a diagnosis, scans etc.

In my opinion, you should see your doctor asap.

Please do not leave seeing your doctor and if over the week-end you experience feeling unwell, go immediately to hospital.

In the meantime, please write down clearly (with dates if possible) with full descriptions of what has happened to show to your attending physician. A specialist will want a full clinical history and therefore I suggest you do this because it is very difficult to remember everything if you are suddenly taken ill.

With good wishes,

Ros

[diva035 in reply to lupus-support1]

thanks i have been having heparin shots i'm unable to move around and in nursing home right now so i get heparin shots the different diagnoses you said i'm not sure i had 27 different blood tests from my rhuematologist and most was normal except the double strand lupus and c reactive protein one of the compounds was high and a few others but after that medicine my creatine ratio level was high baso was low or high rdw was low or high so who knows whats going on now.

[lupus-support1 Administrator in reply to diva035]

I am relieved you are in the company of medical professionals who can look after you.

CRP or Creative Protein usually accompanies the ESR which shows levels of inflammation in the body. Usually - but not always - a high CRP with a high ESR denotes an infection.

In SLE, a low/normal CRP and a high ESR indicates inflammation and active lupus.

The double strand test when positive indicates SLE or systemic lupus erythematosus. There are other forms of "lupus" including a type that only affects the skin, but it seems you have SLE or lupus for short: they are not 2 separate conditions.

I think it would be helpful for you to talk to the doctor in charge of you ie the rheumatologist and ask him/her to explain what is going on because it seems this is what you need. Unless we understand what is going on, it is very difficult and can make us feel very anxious.

I am just surprised that no one has sat down with you to explain your symptoms. It is very common to have a wide range of blood tests - this is quite normal - but you need to ensure the rheumatologist is an expert in lupus. If you contact the Lupus Foundation of America, you can find the nearest chapter nearest to you in Maryland and contact them for help and support. You can find them here: lupus.org

With good wishes,

Ros

[diva035 in reply to lupus-support1]

ok thank you so much for your help

[HollyHeski Administrator in reply to diva035]

Youve got some really good advice from lupus-support 1 & Lure 2.

I hope you turn the corner soon & get the help & advice from your specialist.

Big hug x

[Lure2]

Hi again diva035,

I am sorry you have had so much work with writing this post also but this way other members will see it and give advice also.

Look for a Specialist and try to find out what bloodtests you have done. Perhaps you have already done the 3 tests for HS/APS and then several of your symptoms could come from our illness HS/APS also.

I have had micro-emboli or clots and they are not seen on a Scan of today as they are too tiny. A Specialist knows that they exist together with our illness. Did you feel better with the Heparin-shots. Hope you get them every day.

Take care!

Kerstin

[diva035 in reply to Lure2]

thanks no i feel like i'm getting worse everyday i'm trying to see specialists.

[Lure2 in reply to diva035]

What anticoagulation are you on at present? Are you on LMW Heparin (Fragmin)shots every day? They should help if you take them every day. But they do not help at all but you are getting worse.......? Anticoagulation does not help everything of course. But it should help the slurred speach and brain slowing down etc.....

Kerstin

[MaryF Administrator]

HI, I hope you get sorted out as soon as possible, I note no gall bladder, and of course gall bladder problems are linked with a thyroid problem, which often gets missed due to over reliance of the TSH test, which myself and other colleagues do not trust. It is vital that you have a specialist who understands your Hughes Syndrome/APS, we have a list of specialists on the right hand side in pinned posts. As they are testing you, do make sure they look at your Iron, B12 and D as well as running the normal Hughes Syndrome/APS tests:, listed in the link below

londonlupuscentre.co.uk/hug...

I will add that hoarseness i another symptom of poor thyroid function. I realise you can't do this now, but a lot of us test privately for more accurate thyroid investigation, and do rounds of tests like these:

TSH, FT4, FT3, TT4, Thyroid Peroxidase Antibodies,Thyroglobulin Antibodies, Ferritin ,Folate, Vitamin B12 (NOT ACTIVE B12), C Reactive Protein, Vitamin D (25 OH), REVERSE T3, Insulin, HbA1c, Magnesium.

Having an out of kilter thyroid not detected or indeed medicated will make all your other problems worse.

Many of us join Thyroid UK, the charity and also their online forum.

I hope you get better soon after this acute phase.

MaryF

[diva035 in reply to MaryF]

thank you so much i have vitamin d defiencency and b12 has been low so has free tsh i need to redo everything.

[MaryF Administrator in reply to diva035]

Let us know how it all goes with re testing, I do my thyroid testing privately, and usually add in B12, D and Iron, even if the doctor is doing that. MaryF

[Wittycjt]

Could you be experiencing "tardive dyskinesia" from the gabapentin? Possible adverse reaction...check into this. Good luck, Cindy in NJ

[LWDP]

As a gabapentin user myself, I can tell you that I've been told that it's really important to start small with the dosage and work up to what level works for your pain. To begin with you shouldn't be taking more than 100mg a day. If they started you off higher than that it might be what is causing your reactions.

[Seed1974]

Sorry to hear about your situation. I myself was it knitted on June 19th and told that I had a TIA and before I left the hospital after two MRIs a EEG and ultrasounds on my neck and heart the discharge said I had a severe case of sinusitis. I had complete loss of my right hand my mouth on the right side head a droop to it and severe burning in my right leg and foot. 9 begin after weed eating in the Sun for about 3 hours even though I was taking breaks about every 45 minutes to stay hydrated. It began when I had a very sharp sudden stabbing headache on the right side of my head and I myself have always had the headaches that you could get rid of with a few Advil. My taste sensations was decreased rapidly and put for instance ketchup tasted more like vinegar are chocolate just had a bitter taste I could actually smell the taste but not taste The Taste if that makes sense. I was in the hospital for 5 days. And like I said they said I had a severe case of sinusitis but the first diagnosis was a TIA. They put me on Eliquis which is a blood thinner twice a day Neurontin, a medicine called Tricor, a new blood pressure medicine which is hyzaar and another medicine I can't remember the name I would have to look but it is for severe vertigo. And it made me really stop and think if I had a bad case of sinusitis I would have received some heavy antibiotics to clear it up but that did it happen. I have a history of type 2 diabetes, atrial fibrillation, sleep apnea I use a CPAP for and anxiety. After I was released from the hospital I begin taking the medicines keeping my blood pressure checked twice a day my sugar kit twice a day and everything seemed to be going okay until a month and 3 days later I had another attack which was more severe than the first one and like with the first one I had pretty much all the same symptoms but they were just intensified and the other main thing that occurred with this isn't it was the sciatic nerve was to the point to where they were administering morphine to me every 6 to 8 hours and when I went to have my MRI on this particular occasion I could not get in the machine because of the anxiety and panic attack which is something that has never been that severe I had to actually be intravenously sedated just to get an MRI. And the admitting doctors in the ER both said I had an acute stroke. However I was trying to get up and walk everyday with the therapist in the hospital and my leg would go into convulsions and just begin to quiver rapidly and they documented it but when I was released from the hospital three other doctors that had evaluated me said I had a case of mastoiditis which for you do not know it is a severe ear infection I have not had a ear ache since I was 15 I am now 43 years old. Yet they never done a test on me at all in my ears they said they saw it on the MRI. However I kept my mouth shut I had to do a follow-up visit with the neurologist a week later after I was released and he quote-unquote ask me how was the quivering coming along in my leg and I told him the same as always. So he prescribe me Xanax for severe anxiety and Celexa. And for you guys that have never heard of Celexa it treats severe OCD and chemical imbalances and things such as that and he put me on the highest milligram that you can get. So I'm a person that likes to dissect things as far as look at them at every angle so I went on YouTube and listen to stories or should I say horror stories about Celexa it actually scared me. But following the doctor's orders I took it after the 4th day when I went to bed that night I felt strange and did not sleep very well the next day I'm home alone and I hear people having conversations in my house in one of the three back bedrooms to the point to where I get up and get my pistol and go from room to room to make sure there is no Intruders in my home. This happened on numerous occasions so I set up appointment with my family doctor and I took the medication in and come to find out it had a very negative side effect on one of the blood pressure medicines he had me on. Sorry about the link of my conversation with you guys but I would greatly appreciate any input on the situation and the reasons being is because it happened at work and the workman's comp people are trying to say that it was not work related yet my cardiologists said that the heat induced my extra fibrillation which sent my heart into a Eurythmics state that could have been the whole culprit to the main thing so now on top of all of this it's a stressful battle with evil people that are supposed to be for the employee but they turn out to be against you. So if you guys have any input or comments I would love to hear from you I am so blessed that I found this site where I see other people experiencing these situations and it makes me feel like I'm not crazy LOL. And again please feel free to comment I look forward to hearing from you guys

[Lure2 in reply to Seed1974]

Hi Seed1974,

I can see that you have joined our site today.

I have read what you have written above and it is a lot of different drugs and events that has happened to you and I am so sorry for your exstremely stressful situation.

I also tried to find if the Doctors have diagnosed you with Hughes Syndrome/Sticky Blood/Antiphospholipidsyndrome (3 words for our illness here) but I can not find that you have got our illness so it is impossible to answer you as this is a site for our blood-disorder (too thick blood).

We are not medical educated and only tries to help others with our common disease.

I do hope you will soon feel better and when someone has a TIAs or a stroke (as some of us with neurological symptoms also have here) a lot of curious sensations and feelings like we are crazy can happen but we are not crazy. We understand how you feel.

I wish you well and if you one day is diagnosed with HS/APS you are welcome back to our site but just now we can not help you.

Best wishes from Kerstin in Stockholm

[HollyHeski Administrator]

Hi, Im so sorry you seem to be going through the mill at the moment.

Im not sure this site is the right one for you? Do you have a diagnoses of APS/Hughes syndrome?

This is an autoimmune disease, that gives us clotting sticky blood. If you have this disease, please tell us where in America you are and hopefully we can direct you to a specialist, its important for us to get the right anticoagulation.