I have just come back from my Psychiatrist; it was a really good appointment.
My doctors are just really concerned because in the last three months, I have just been "spiralling downward." They are starting to think that the meds may actually be doing more harm than good.
My Neurologist is concerned because of the C.N.S. involvement, especially because having seizures originating from three different lobes of your brain is apparently very rare and usually only occurs in conjunction with a serious case of Encephalitis. :shock:
My doctors think that the virus which I caught in Austria is permanently circulating in my blood and has resulted in wide-spread Viraemia, affecting all of my organs, including, most concerning of all, my brain. They also think that my highly allergic body has become allergic to the virus! :? :shock: They know that there is definitely an auto-immune disease going on here, but the virus doesn't seem to have left my body either! This is why they cannot put me on Immunosuppressive drugs; it's just too dangerous because the virus is still around and they're scared that the virus would kill me if we made my immune system any weaker than it already is. They know that I have Sjogren's Syndrome and some form of Lupus (they're still wondering whether it is turning systemic or has turned systemic and that they're just not finding it in the blood. Of course, five percent of Lupus patients have negative A.N.A. Tests anyway, so they can't really rule that out yet. For example, one of my mother's friends has Discoid Lupus, but her A.N.A. Test was negative. My stepmother's cousin was diagnosed with S.L.E., even though her A.N.A. Test was negative because she had Arthritis everywhere, Pericarditis, Pleurisy, Kidney Disease (she was on Dialysis), mouth and nose ulcers, a malar rash, fatigue, constant low-grade fever, loss of appetite, Alopecia, Raynaud's Phenomenon, Sjogren's Syndrome, Vasculitis, Antiphospholipid Syndrome and she was photosensitive! :shock and they're definitely considering Behcet's Syndrome.
They are considering possibly admitting me to Hospital for two weeks at some stage, where my Paediatrician/Paediatric Cardiologist, my Neurologist and my Psychiatrist will "look after" me. They want to try and taper me off my meds, gradually, to see if it will make a difference. We're not sure what we're going to do with the Anti-Epileptic Drugs yet; I'm seeing my Neurologist in two weeks to discuss all of this. I am seeing my Paediatrician/Paediatric Cardiologist in two weeks on the same day as well and I'm going to ask him if he knows of an Immunologist/Allergist or someone who does Immunotherapy because that would be brilliant for my allergies and I would then be able to stop taking my allergy meds (just the pills; I would still use my nasal spray), which would be wonderful, as anti-histamines are known to cause and worsen fatigue! However, they will still allow me to use my Inflammide Cortisone Inhaler, my Ventolin (Asthma pump), my eye drops (for the Sjogren's Syndrome), my nasal spray, my bulk-forming laxative (it's not a pill or anything, it's more like little seeds, which you swallow with water), my skin creams and my vitamins (High Potency Vitamin B Complex with Biotin and Folic Acid, Vitamin E, Magnesium, Zinc and Omega 3 Fatty Acids). They're hoping that the only pill that I will ever have to chronically take will be my Epilim and possibly, my Zelnorm (although they would preferably like to stop that too, but my colon is like a rock!)
My Paediatrician/Paediatric Cardiologist would like me to see a Nutritionist who will be able to help with the "detox" and with following a strict "diet"; they're hoping that she will be able to help me with all of my food allergies, as I am allergic to gluten (Celiac Disease), seafood (causes Anaphylaxis), fish (causes Anaphylaxis), peanuts (causes Anaphylaxis), onions (causes Anaphylaxis), garlic, yeast, tomatoes, avocado pears, egg whites and jam (don't ask! I have no idea why, but ever since I was five years old, jam has made me vomit like nothing you've ever seen before and I break out in a really weird rash on my face! :?) - yes, I'm being serious! :shock:
While I am in Hospital, if I need a Laparoscopy (to check for and repair, if there is any, Endometriosis) or an Endoscopy, etc. my Psychiatrist said that they will organise that then too.
Well, I feel a lot better now that I know that my Neurologist believes me, etc.! I'm so embarrassed though because I wrote a poem about my Epilepsy and my Psychiatrist read it and now he wants to send a copy to my Neurologist (who desperately wants to read it, apparently! ops and my Paediatrician/Paediatric Cardiologist, who is also very keen to read it! ops: ops: ops: ops: ops:
Well, I'm glad they are finally taking your problems seriously and making a concerted effort to get to the bottom of what is wrong. I hope you don't end up having a lengthy hospital stay, but it would be better than the repeated trips to the emergency department.
With your medical history - I am wondering if you have ever been tested for a primary immune deficiency by an immunologist - some of your tendency to get repeated infections could be explained by this. And an immunologist would certainly be helpful in treating your allergies - although you might not be a good candidate for immunotherapy - people who are highly allergic can react to the minute amount of allergen in the injections - it might be more stress than your body can deal with right now. I am wondering if your allergist or pulmonary specialist has every discussed a medication called Singulair (at least in the US - chemical name is Montelukast sodium) with you. It is a leukotriene blocker that can reduce symptoms of both asthma and allergy - because it blocks the action of the cells involved in the symptoms - and might enable you to reduce some of your other asthma and allergy meds, especially the inhaled steroids. Even inhaled steroids can have systemic effects at prolonged doses, and it might helo your immune system recover. I have had a lot of problems with both asthma and allergies in the past. (I share your allergies to shellfish and some seafood, and also have many problems with dreug allergies too) This med cut down on my need for other allergy and asthma meds considerably. So it might be worth discussing with your doctor as an alternative to anti-histamines. It sounds like you also need to talk with an infectious disease specialist about the ongoing problems with the virus in your system to see if anything can be done.
Please us posted on how things develop - and be careful tapering off your meds! Hope everything goes well.
I am SO sorry that I have been unable to reply before now, but our Internet is not working and I had no way to let you know! :cry: It still isn't working, so I am typing this on my mom's best friend's computer.
Thanks SO much for all of the information! I will be sure to discuss the med. with my doctor.
Unfortunately, there aren't really any Immunologists around here, which is a massive problem, as I'm sure you can imagine! I know that it would most likely be very beneficial for me, but what can one do? However, I will be talking to my Paediatrician/Paediatric Cardiologist about whether he knows of one because I think that Red Cross Children's Hospital has one, but I might be a bit too old now.
I was actually considering that myself. I recently read about Common Variable Immunodeficiency (C.V.I.D.), so I looked it up on the Internet, but there was very little information. Do you know anything about this condition, by any chance? I have never had my IgA, IgM and IgG levels tested before, although I am going to suggest this to my Paed./Paed. Card. because I think that this is very important. My Psychiatrist was very surprised that I had never had these levels tested...
Wow! The past three days have been hectic...
I went to see my Neurologist on Monday and he was HORRIFIED by all of the weird neurological things that I have been experiencing. So, he told me to stop the Epilim IMMEDIATELY.
He then said that he no longer thinks that I have Epilepsy; he thinks that I have Vasovagal Syncope and that not enough oxygen is reaching my brain, so I am having seizures.
However, I cannot accept this. Firstly, I often experience Todd's Paralysis after Tonic-Clonic seizures. Secondly, I usually wet myself, which is supposed to be fairly uncommon in Vasovagal Syncope. Thirdly, Vasovagal Syncope does not explain the Complex Partial seizures. Fourthly, people are not confused after Vasovagal Syncope episodes.
My mother asked what we must do if I have another seizure. He said that he will send me to the Epileptologist to be monitored on an E.E.G. for a week at the Epilepsy Centre. However, I cannot go now because I cannot afford to and refuse to miss any more school, end of story.
Then, I went to go and take a look at my health diary. I discovered that all of these weird neurological things began almost immediately after I had been prescribed Ethipramine (Imipramine Hydrochloride) for Fibromyalgia. So, I looked up the package insert on the Internet and what I read nearly killed me. :shock:
The package insert stated in BOLD CAPITALS: THIS DRUG IS NOT SUITABLE FOR INDIVIDUALS WITH ANY TYPE OF CONVULSIVE SEIZURE DISORDER. Well, Epilepsy is certainly a CONVULSIVE SEIZURE DISORDER, wouldn't you say?
I nearly collapsed when I read the side-effects. Firstly, under 'Warnings', it stated that the drug should not be used in individuals with Orthostatic Hypotension (:! or any type of heart arrhythmia, including Tachycardia (:! and Bradycardia. Then, I read the side-effects: Tremors (:!, which occur FREQUENTLY; Migraines (:!; Paresthesia (:! and symptoms suggestive of Peripheral Neuropathy; Epileptic Seizures (:!; Myoclonus and various movement disorders (:!; Heart Palpitations (:!; Vasovagal Syncope (:!; Peripheral Vasospastic Reactions; blood sugar level fluctuations! :shock: And these are only side-effects relating to what I have been experiencing! :shock:
I think that my Neurologist thought that I would not have another seizure if he stopped the Anti-Epileptic Drug because the dosage had been very low anyhow (that was my Specialist Physician's fault; she did not obey my Neurologist's dosage instructions) and I had not had very many tonic-clonic seizures recently, but, unfortunately, he was wrong. I had a bad seizure this evening and completely soaked my mother's bed. I have NEVER urinated so much in my entire life; it looked like I had voided an entire litre of urine (honestly, I am not exaggerating)! I was so confused after the seizure that I took the wrong pill (of my contraceptive pills) and could not remember for the life of me whether I had taken my Sertraline or not! :cry: I then forgot what day it was and how to turn the washing machine on! :cry:
So, my mother phoned my Psychiatrist this evening and he told my mother to phone my Neurologist tomorrow. We want to ask him to increase the dosage of my Epilim (and put me back on it) at least until the holidays, when I will be able to go on the E.E.G. monitor for a week. If the drugs do not work or I experience any adverse reactions, I will stop taking them immediately.
My Psychiatrist has changed my Fibromyalgia med. to Sertraline. He always said that he was unhappy with the Ethipramine and so did my Neurologist.
I am seriously depressed about the seizures... :cry: Unless I am put on a higher dose of the Epilepsy meds (I never did stop taking them because I was too frightened), I refuse to go to school and out anywhere or with anyone. I am terrified of Status Epilepticus and keep having nightmares where I enter Status, but no-one will help me! :cry: I CANNOT keep having seizures like this! As it is, I will be unable to take my Learner's License Test (for driving) in September because I have to be seizure-free for an entire year! :cry: I am really upset. I understand that my doctors would like to have me on as few pills as possible and obviously, I would love that too, but seriously, they are NOT the one having seizures here and I CANNOT have uncontrolled seizures! They are ruining my life and NO-ONE WANTS EPILEPSY! :cry: I just hope that my Neurologist will agree and that the drugs will work and we will have no more trouble.
Just wanted to let you know what was going on...
Keep well and God bless!
I am sorry you are having such a difficult time. Imipramine is often prescribed in the US under the brand name Tofranil, for treating depression and some chronic pain conditions, including fibromyalgia. It's a tri-cyclic antidepressant and they have a lot of potential side effects and drug interactions, so it doesn't seem like that particular drug would be a good choice for you, especially with a history of seizures. Even though you may not to continue taking this med - it's dangerous to just stop taking it, so you need to talk to your doctor about how to wean yourself off.
I know your mom has some medical training - does she know how to give injections? If she does, then you should talk to your doctor about having injectable Ativan or Valium on hand in case you do go into status. I don't think a vasovagal episode could cause the symptoms you are having now - most people who vasovagal just faint and then recover in a few minutes with no aftereffects - there is no postichtal state like you would experience with a tonic-clonic seizure. But I am wondering if you have ever been on an ambulatory 24 hour cardiac monitor (called a holter monitor in the US). It's a small cardiac monitor you wear and it records your EKG tracings for 24 hours. If you are having periods of slow heartbeat that might be triggering your episodes, it might be a good way to find out what is going on.
Thanks very much for your advice and support.
Yes, I have been on a holter monitor for twenty-four hours, but it didn't pick up anything like that... I have also had an Echocardiogram and everything was perfect: my Paediatrician/Paediatric Cardiologist told me that I have "a beautiful heart"! :lol:
Also, I have a Tachycardia and my heartbeat is always above 120 beats per minute at rest (it has been 140 beats at rest when I was in Hospital once!), so I don't think that my heart rate is likely to suddenly become slow enough to cause syncope.
I will let you know what my Neurologist says tomorrow.
Keep well and God bless!
Well, I had a bad night. :cry: Unfortunately, I woke up at approximately 04:00 a.m. having a Frontal Lobe seizure (where I lose control of my left arm and it flaps and flies around all over the place; this is another thing that Vasovagal Syncope does not explain!)
I felt extremely nauseous and actually woke my mom up because my stomach wouldn't stop running and then I began to vomit. Unfortunately, my stomach did not like the Sertraline, so now my Psychiatrist has changed my Fibromyalgia meds to something else.
I had almost no sleep and felt extremely ill when I woke-up again this morning, so I could not go to school. :cry: Plus, my left arm felt as if I had broken it; it was SO sore, weak and tired! :cry:
My mother spoke to my Neurologist's nurse and she (the nurse) said that she would get in touch with him as soon as possible. However, he is not available until Monday because he practises at another hospital on Thursdays and Fridays because that hospital does not have a Neurologist. I think that the nurse will phone him on his cellphone or something, though. She said that she would get back to us as soon as she could, but in the mean time, she said that under no circumstances am I to stop taking the Epilim. My mother explained the situation to her and said that I am in no state to be monitored on an E.E.G. for a week and the nurse was very understanding and nice about it. I will let you know what my Neurologist says as soon as I hear.
Keep well and God bless!
Well, I discovered on Friday that I have a Thiamine (Vitamin B1) Deficiency, which was most likely responsible for my weird eye movements. My hands and feet started to burn uncontrollably on Wednesday night; it was so bad that I couldn't even allow the duvet to touch my feet! :cry: When I woke-up on Wednesday morning, though, I had the worst back spasm of my entire life, which believe me, is really saying something! My back was driving me CRAZY with pain and the burning started that night, so I am not sure if this was related? :?
Anyway, my Paediatrician/Paediatric Cardiologist has given me 100mg of Thiamine per day for two weeks, which I started on Friday. It already seems to be helping, which is great and for the first time in days, my feet and hands did not burn last night!
My best friend slept over at my house on Saturday night and for some reason, I could not sleep that night (I've suffered from Insomnia for years, though). I was still awake at 03:00 a.m. and was just lying down and thinking (we slept on camping mattresses in the lounge). The next thing I knew, I was sitting on my bed in my bedroom and had drooled all over my face! :?: :? I must have had a Complex Partial Seizure and wandered off to my bedroom?!
Plus, this one bone on the right side of the back of my head (there are two identical bones like this on either side, just above the skull) was driving me insane with pain (I don't know if I had a tonic-clonic seizure and hit it somehow?)! I woke my mom up and told her about it. Then, I went to go and lie down again. Everytime I moved my head, a searing pain would go through the right side of my head. Eventually, I dropped my head lightly onto my pillow and this extreme pain shot through my head, from the back to the front and then everything went black. I think that I fainted from the pain, although I may have had a tonic-clonic seizure.
I spoke to my Psychiatrist this afternoon and he told me that my Neurologist told him that it's not Epilepsy. Well, the Frontal Lobe Seizures must be Epilepsy because there's nothing else that they can be. I then spoke to my Paediatrician/Paediatric Cardiologist about my seizures and when I explained them to him in more detail, he agreed with me that they did not sound like Vasovagal Syncope. There are just way too many reasons why it cannot be Vasovagal Syncope. I think my Neurologist is saying that it's not Epilepsy because he doesn't think that it's possible to have seizures originating from three lobes, but you know what? I don't care what his textbook said because I am not a textbook, end of story. Both my Psychiatrist and my Paediatrician/Paediatric Cardiologist say that I must phone my Neurologist and speak to him tomorrow.
I am just getting SICK AND TIRED of this nonsense! Everyone thinks that I should go on the E.E.G. to be monitored for a week with the Epileptologist. In a way, I think that the Epileptologist would be a good person to speak to about the seizures because he may be able to help me more (my Paediatrician reassured me that he's brilliant and everyone says that he's excellent), so in that regard, this would probably be a good idea. However, I am absolutely TERRIFIED that I won't have a seizure while I am there and then they won't believe me! :cry: All of my friends, my mother and half of the teachers in my high school have seen me have seizures and I'm sorry, but it cannot be possible to fake having a seizure! It just CAN'T be possible! I seriously hurt myself! No-one could hurt themselves like that if they were conscious; they especially could not allow themselves to drop to the floor and hit their head so badly that it swelled and then convulse for another two-three minutes, while banging one's head into the floor!
This is really FRUSTRATING me!
I agree that is very frustrating, and you definitely need to have a long conversation with your neurologist to clarify what he is saying. It may simply be a difference in terminiology. For instance, although I have seizures, my neurologist doesn't consider that I have epilepsy, since my seizures are directly related to neuro involvement from the lupus. The way epilepsy is classified in the US, it's possible to have a seizure disorder that is not "epilepsy" per se - for example, seizures related to a metabolic disorder. So maybe that is what your neurologist is saying, that you have a seizure disorder that is not epilepsy, but some other type of seizure disorder.
Do your doctors know what is causing the thiamine deficiency? Is it possible that it is a symptom of some underlying metabolic disorder, which could also be causing the seizures/
I never thought of that; thank you very much for pointing that out to me. I suppose I will have to speak to my Neurologist about this. The only thing is, why doesn't he want me to be on any anti-epileptic drugs then? I think that he is just worried about side-effects and thinks that the A.E.D.s are making everything worse, but the A.E.D.s help me! Besides, I'm on a low dose of Epilim at the moment anyway.
I'm not really sure about the Thiamine Deficiency; could Celiac Disease be causing this?
Thanks and keep well!