Prozac, visual snow, migraines and Verapamil

I thought I would make this a post about multiple topics as they are all related.

Firstly I am starting to accept what may have happened to me. My vision and mental issues did start after I had stopped taking Prozac. Is that a coincidence? I am not sure. I have found plenty of people with thyroid disorder, like myself, who have the same issue. Some who have never taken an antidepressant before. So the term is called persistent perception disorder. For those who got it taking a hallucinogenic type drug, you would add that term in front of the other words. I however was taking Prozac so it gets a shorter name. Weird huh? So from what one Dr.'s theorizes is that some people have a weaker genetic type and when you take drugs, prescribed, or not... it can lead to this PPD. Is there a cure? No. There are treatments... which I will not partake in as it has to do with taking more drugs that basically calm you down and I that is another story in itself. As of now there are a few doctors studying this condition. There are probably thousands of people who have some form of this disorder, but because there aren't many Dr.'s who know about it, or understand it these people can do nothing about it, but live with it... like myself. So prayer is all I have at this time.....

So I finally went and seen a headache Dr., a better one than last time. She diagnosed me with vestibular migraine. She didn't prescribe an anti epileptic, nor an antidepressant, tricylic etc... nope, just Verapamil. A calcium channel blocker. Of course I came home and googled the crap out of that medicine, and of course I scared the crap out of myself. After 1 failed attempt to take it, 1 call in to the hospital, and one call in to the Dr., I finally took it religiously and what do you know.... No more daily headache and I haven't had a migraine in 2 weeks. I am however, now getting heart palpitations even though I am opening the pills up and pouring out some. I am taking a very low dose so I don't understand why I am getting the palps. I am going to put a call in to the Dr. on Monday. Maybe she will switch me to tabs.

Well that's it I guess. I really wanted to come on and complain, but writing something informative for anyone who reads this is much more rewarding than me coming back on in 3 months to read an angry post. I guess I will just say, I wish there was more awareness of what SSRI's can do to the brain. Specifically the visual cortex, which is considered another brain itself, but very sensitive. A lot of people complain of light sensitivity on antidepressants, and this is why. It's also working on your 2nd brain. Had I known, or maybe had my parents known the side effects of putting a 15 year old girl on Prozac would have been, I'd like to think they would of nixed it. But the fact that my mom had been taking them for years.... luck certainly wasn't on my side. Maybe I was destined for this? So I ask God "Why me?"..... then that small still voice tells me that I chose this myself. Strange... very strange. My hope is that this will eventually wear off. That somehow my brain will correct itself as it is always trying to do, but the likeliness of that happening... probably slim. It would be great if some kind of a Dr. had a way to tell if my brain was permanently damaged, or if it's a matter or some wires being crossed. I guess we can send men to the moon, but have yet to master the brain? Strange!

Flunarizine

So I just got word that a friend of mine who had had the same symptoms as me found a medicine that worked for him. It was suggested by the Dr. in California who is researching the condition. He has long known of its potential to work, I guess it doesn't work for everyone though. I am thinking of bringing it up to my neuro opthalmologist (sp) to see what he thinks of me trying it. At this point sitting and waiting isn't curing me. It however is preventing me from taking another chemical that could make me worse.

I have concluded upon my own research that taking a beta blocker, which I believe is close to the same class as the above medication, is what caused this problem for me in the first place. The added anxiety in my already stressful life took a turn for the worse while on the medicine and then once off it really did me in. The Prozac some how must of helped in some areas, but I was still having the break through light sensitivity which told me something wasn't right. And once the medicine started to poop out for me it was slowly getting worse with symptoms. Then stopping it brought it out completely only to slowly get worse as the months pass on. I am going on 3 years since the first onset of strange symptoms (while on the prozac). Someone told me yesterday that when you have it so long your chances of getting better decrease, (said in a different way). I'd be ignorant to believe that. That would mean I had no hope and that is a lie. I've had hope since day one. I have hope through Jesus Christ that I WILL GET BETTER!!!

Mayo Clinic

So I first want to start this post and let you know discouraged I feel after seeing Dr's. Today my Dr. of 15 years told me he has never in his life seen a patient with my symptoms and they are rare. Not to mention they are no way related to my thyroid disorder. This is fine, the Thyroid relation part, but discouraging that he, being a Dr. has never heard of my condition... without a name. I am willing to get the surgery, which has been requested, to remove my thyroid, but now I am afraid of what will happen with the anesthesia and my unknown neurological condition. Could it make my symptoms worse? Could I not wake up? No one knows what my condition is or why I have it, how can they tell me I will be fine going under???

Anyways, I have decided I am going to try to get into the Mayo Clinic. I know I just need to go and see if they might find something that I haven't. Isn't this what the undiagnosed should do? I guess so.. but I have little hope with that too. Now it's the decision on which one to go to. Should it be the closest one... or is a distant one more up to date with medical equipment?

I have been praying every night for a miracle. I know God can heal... I just don't know why he hasn't done so with me. This whole ordeal has left me numb inside and it's so hard for me to believe in much of anything anymore, but I stand true to my faith and have to believe that something good will come out of this.

My eyes continue to get worse... afterimages have lessened some, but still there and still bad. Visual snow has gotten worse to where I can barely see in the dark anymore. Trails are much worse... can hardly function outside of the home with lights. Light sensitivity still present. Now I have been losing weight like crazy. My normal weight pre pregnancy was 160... that was with working out 5 times a day. I have cut out gluten to help with migraines, but I am now 130 lbs. This sound extreme to me since I am about 5 foot 7.

Before I go to the mayo I am going to see a gastrointerologist to check for common things. I am also seeing a gynocologist tomorrow since my period is non stop. Maybe it's hormone related since after having my sons the migraines started, along with the snow/static.

Any who... had a horrible migraine last night... Not sure of the trigger... maybe working on the computer at work. I don't know what I can do to stay home. I can not afford it, but it's the only time I can really function. I pray that this is figured out some how.

God bless everyone reading this who has similar symptoms. Some how... God willing, we will get through this.

Checking in

So it's been a while since I posted last. No real updates on me. I have been following up more on my Graves thyroid disease and the Dr. was requesting that I get it taken out considering it's grown very large. My lab work however is showing that my thyroid is starting to go back to normal after 10 years. I think this is impossible because I know how I FEEL and I FEEL hyper, at least more anxious. The anxiety could be because of the vision symptoms. Who wants to be constantly reminded that they are different and the chances of them seeing normal again is very slim?

I am now on part time with my work which has caused my husband to pick up a lot of slack with work and money. I am at the point now where I feel like throwing in the cards and moving up north to be with his side of the family. It makes me sad to think that while my son continues to grow, my symptoms continue to get worse. I won't be able to attend any soccer games at night because I can't see. I won't even be able to drive him anywhere at night, let alone myself. I feel like this is a death sentence at the age of 29. It's been 3 years and medicines the dr's throw at me has only made me worse. I fear that being on the prescribed antidepressant for 10 years off and on and then going off pretty quickly is what caused this. I can't even remember if I was still taking it when the symptoms came on because I didn't really mind them, I thought it was thyroid related.

The Dr. in California is still studying the condition, so this, besides a miracle from God, is my last hope(s). The last I heard they signed on a Dr. from Germany who is gathering information for the study. Once that is obtained, hopefull, and it's not guaranteed, but God willing, there will be some clinical trials going on. I know we are all different, those of us suffering or LIVING with this condition, so the cure might be different. But if they could just find out where in the brain and why then hopefully that will point to the cure.

My family doesn't understand and once it's not talked about it's forgotten. My headaches are back to daily again and the migraines have been more frequent. I WILL NOT take anything for it because it really does get worse. I just feel like my brain chemistry or electricity is doing it's own thing right now, but not the right way and it thinks it is. I am trying to ignore the symptoms in hopes that my brain will filter them again somehow, which I know is possible but some things you can't ignore. I see lines and patterns vibrating a lot more now. Even the bumpers on the cars in front of me while driving will vibrate. It's a shame....... I have so much will and desire inside of me that I am unable to get out. I am scared to do things because of my eyes and some things I am unable to do now. I pray night and day for a miracle..., but it's just not my time now I guess.

I sometimes wish there was someone close to me here who has it so they could understand and I wouldn't feel so alone. The aloneness makes me feel like I can not connect with anyone because they don't understand. The people I've found who have had these symptoms, but found their own answers stop talking to me after a few emails, probably because they are healed and don't want to relive the past. I understand, but I want to help others who go through this even when I get healed. Life is not meant to feel so alone. I know I am going to find MY cure, I just wish I had some more bright neon signs pointing towards it for me :)

My first video upload on VS

So today I posted my very first video on my fight with VS and the migraine - Here is the link http://yhttp://www.blogger.com/img/blank.gifoutu.be/7ou7GgcpMoo

I went to the Neuro Opth. today... he still thinks it's migraines. He wants me to take Elavil, but I am too scared. He did the normal steroid shots, this time getting my upper neck as well. I am pretty sore, but hope it helps. He still says I have occipital neuralgia as well....

I recently heard that Dr. at UCLA in California has signed on a Dr. from Germany to start the research on VS, and will hopefully lead to future studies. I am so happy about this and it really gives me a lot of hope!!

I have been going to church every Sunday to get my relationship back with God. It's tough when you have a condition that makes you feel so disconnected, but I will get there.

I am now working part time to help with my headaches and stress levels in hopes that I might have a breakthrough and my VS lessen or disappear. As of now it's been me running around to collect Dr.'s notes and medications prescribed from 2006 to see if there is a connection somehow with a medication I was put on them when my wonky subtle symptoms started.

Some days I feel sorry for myself... especially when I see other people my age with a child and they are having fun with no limits. I miss that. My light sensitivity is so severe I can't drive at night. When my son gets of age to start sports I won't be that mother on the sideline cheering.... unless, God willing, I get better.

I am still thinking about getting my thyroid taken out to see if it helps with anything... the medication for the graves disease is such a harsh medication and taking it for 10 + years is awful.

That's all for now!!!

Anxiety..... rearing it's ugly face at 12 am

I haven't had anxiety this bad in a long time. I used to get bad anxiety in my teens and would crawl in to bed with my mom while she helped me through it. I don't have here anymore and no one else understands what I am going through. My son is sleeping peacefully in his room and my husband is asleep in our bed. I keep feeling like I can't breathe and want to go to the hospital. I have been waking up out of breath lately and fear that I have sleep apnea as it's getting worse and worse. Part of me says go to the hospital, but the other part says no. I don't want to die!!!! Why am I going through all of this hell??? I am a mother and a wife... I want to be just that... not a young woman going through all of this. It isn't fair to my husband and son, it just isn't fair!

I've had to take kolonopin, which I hate taking, and it's making me tired, but not helping with the not getting a breath bit. If this doesn't go away by 1:00 am I think I am going to go to the hospital. Usually my anxiety is the mind racing bit, not the I can't breathe bit, so I am pretty scared.

Updates......

So it's been a while since I last posted.... I don't bring with me any significantly good news or bad news.....which is.... maybe neutral news. I'd hoped that by now I'd have some kind of answer as to why this happened to me.

I have spoken to another "survivor" of this horrible disorder. He had EVERY single symptom as myself and the others, but also had some stomach issues. He tested negative for celiac's disease, but once he had his endoscopic exam of his intestines it was found that his Cilia was flat. He did his own research and found that this was a sure fire sign that he had a gluten intolerance. He went on a gluten free diet and all of his stomach issues, (which I don't have), went away and the visual symptoms cleared after 6 months or so. I am proud to say I have been on the gluten free diet for a month or so now and have had good results with my headache. It has gone down a few degrees in severity. I used to get migraines a few days a week, it's now been a couple of weeks, if not a few since my last migraine. I am not trying a sugar free diet, but cheated today, so I need to get back on that wagon tomorrow.

Also, I have gotten at least 1 diagnosis that fits and has had some results, but it appears that I have more than 1 disorder going on at the moment. After getting a myleogram, which by the way was one of the most painful tests I've EVER had done, I was only told what I've already known. Cervical herniation, cervical bone spur, 2 hemangioma's, (1 in the thoracic and 1 in the lumbar inside the vertebrae), severe herniation compressing the nerve roots in my lower lumbar and severe spinal stenosis. Can any of this cause vision problems.... "No" says the neurosurgeon. I left yet another doctors office crying once again. At that point I had no hope for anything. I was destined to have the daily headaches and vision problems for the rest of my life only waiting for them to get worse.

I decided to go see a neuro-opthalmologist by the name of Dr. Marc Levy. I went through a gamot of testing, some of which I've had done before, and others that were invasive, such as a piece of paper put in between my eye ball and eye lid to test how dry my eyes were. Anyways, so I was in the middle of telling him my 28 year history and my novel amount of symptoms when he interupted me. "I think I know what you have!" "Excuse me?" I said. My mind just kind of blank and open to try to understand what the Dr. just said to me. I have been to 4 Neurologists, 3 Opthalmologists, 1 neurosurgeon and a partridge in a pear tree and NO ONE has even speculated as to what was going on with me. He began to go back to my head injury that occurred when I was about 4. I have a touch sensitivity on my scalp since the injury. I've also had headaches that would come and go for months at a time and some occasional light sensitivity, usually in grocery stores or malls with fluorescent lighting. Sometimes I would get it pretty bad at night even when I wasn't around lights or oncoming vehicle headlights. He then explained that it sounds like Occipital neuralgia and that a simple injection of an anesthetic/lidocaine with some steroids in it would immediately give us an answer. He excused himself to get the medicine and a nurse came in with a waiver to sign. I signed my life away..... I was willing to do anything for even an iota of relief. As soon as she left and shut the door I bowed my head and prayed. This was my only hope for relied. I imagined getting my life back and doing the things that normal people do. Having fun with son while he is still young and being a better wife to my husband. The Dr. entered the room with a needle. He had me flip my hair over my head and lean forward. He swabbed some alcohol over the area and pressed around looking for sensitive areas. He injected it, VERY PAINFUL, into various parts of my occipital area of my head. He told me to rub the horns they made as he excused himself once more saying it could take a few minutes. I immediately noticed the whole back of my head was numb to the touch. Now me being the anxious person I am, this freaked me out. I did not like the fact that I could not feel the back of my head and had no idea when I would again. I literally had to talk myself out of this panic that was coming on. The Dr. came back in the room a few minutes later and asked me how I felt. I looked around the room and still noticed all of the after images and the flashing visual static/snow. I said.... I still see the visuals. He said that could actually take a week or so or more to go away as it's been there for a while. He also said it sounded like I may have 2 separate things going on. He asked me to stand and lean my head from side to side. He asked if it hurt. It actually did not. The headache in the back of my head and neck was now gone. I could even stand without feeling like my head was going to explode. This was a great start. I left feeling hopeful as he said it would get better and better as the days went on. As soon as I got to work I noticed I could still feel some head pain in my temples and in the front of my head. I guess I was noticing this pain since the other pain was gone. A few hours later the lidocaine started wearing off and my raging headache came back full force. I do not know why it was so bad, but my guess was it was actually the same level it usually is, but I went 3 hours without it that I forgot how bad it usually is. The next couple of days were horrible as on the right back side of my head where 1 of the injections were was very sore. It hurt for the shower to even hit it or to lay on it. I called the Dr. a week later to let them know. They were surprised that the injection hadn't worked and advised me to come in again for another set of injections. The 2nd time around the Dr. asked if it had helped at all and I told him about the few hours of relief. He said that was good and it sounded like I needed a stronger lidocaine and a stronger steroid. This lidocaine injection would last 8 hours or so. He was looking for tender spots and went right back in to the already sore spot. This time my right ear was left numb.... boy is that a strange sensation. I told him about the vision being the same and he again said it could take time. Since then I have also started a yeast detox with a product called ThreeLac and boy did it make me feel horrible. Stomach flu symptoms and it made my vision worse. I have had horrible light sensitivity on top of everything. I can tell you that the back of my head does not hurt much anymore. My neck still does and the front of my head and temple still hurt as well as the top of my head. At this point... I don't think it was much of a success, but it helped curve the pain a bit. I have had an increase in anxiety and know that this is something that will make my visual symptoms worse. I am scared to take my antidepressant anymore, It's been almost 2 years since I last gave it a real shot, and that scares me even more that by not taking them I could be doing more damage. I wish I knew why I have this problem and where it came from. I have such a history with many factors playing a role. It could of been the head injury, adolescent drug experimenting, Prozac/Antidepressant use for years, either coming off of going on, the car accident, stress, or my thyroid disorder. I am at a point where I feel like my life is over, yet still going on. I am a shell of a person with a family to tend to while I am on autopilot. I pray every night and any chance I get of peace it's speaking to God. I have lost a lot of hope in my religion and have started questioning my faith and I DO NOT want to stay in that spot. I have lost touch with myself and my feelings. The only emotion I know anymore is mad or sad. I can cry at the drop if a dime with anything emotional. I wish there was a Dr. who had the answer or who wanted to investigate me personally as I know we are all different.

I received a call from a fellow friend/sufferer who brought me good news about a world renowned neurologist named Peter Goasby. He is one of only a few Dr's who has successfully treated this disorder. As we know there are a number of different causes and as he says, you find something wrong with you and treats it. She said, as he's said before, he is going to start the studies soon on finding an answer to this disorder. He wants to find the mechanism in the brain where this is happening in hopes that he can find an answer. They just hired on a German Dr. who will be on the study for 2 years researching all he can on the disorder, case histories, etc. This is HUGE news for us. There IS someone out there interested in helping us!! What a great man he is to do this! No one else has cared... we have all been just yet another person with an unknown source of symptoms. This man has accepted that this can be caused from an array of problems within the body, but he wants to find the part of the brain being affected to fix it. Maybe he can then find a medicine to help with the symptoms. Just as one would take pain medicine for a headache. I know this could just be covering symptoms, but think of all of the people who would be helped with this. If the numb feeling was all I had to deal with, I could manage that, but having that and all these scary visuals... I feel too distracted and crazy to participate in much of anything.

I have also been corresponding with a guy who also suffers and he mentioned that the Dr. recommended taking CoQ10 and that some people have gotten good results. He has spoken with a girl who all visuals but the static cleared in 3 months time on the CoQ10. I did my own research and saw where Grave's disease patients have the lowest CoQ10 levels in any autoimmune disorder. I have been on my CoQ10 for almost a month now. No decrease in anything at this moment, but I am staying faithful to it.

My new endocrinologist lowered my medicine and I feel as though I am going hyper again. I wake up with my pulse pounding and have so much anxiety. Some days I feel like I can't catch my breath and all I am doing is sitting down. I just took my 2nd blood test and should have the results soon. I am hoping they tell me to increase the meds. They are pushing towards me getting the surgery to remove it.... and well I am playing with that idea as well. I know it's been too long to be dealing with this and it may help with the disconnected feeling a bit as it's common in some graves sufferers.

I really wish I still had my mom hear to talk to. Some days it feels as if my mom has always been gone..... and other days it's as if she died yesterday. It's been over 2 years now and I don't think I will ever get over her sudden death. I want to pick up the phone and call her and tell her how much I love her and how she never let me down, no matter what we'd gone through, she is still my mom and I am still her girl. Our last conversation will forever echo in my mind and the pain forever scarred on my racing heart. I love you mama!

So that's the update. I really don't think I have any followers, but if I do, thanks for reading!!!

Still searching

Yup, I am still here, still suffering... and with no answers.

I have run in to A LOT more people suffering with this....all women for some reason. A lot of us this happened in our early twenties and got worse with pregnancy. Only a couple have the migraines like me. I found someone on a site the other day who had this for about 4 months and it went away with Gabapentin... so that is what I am going to talk to my new neuro tomorrow about. I am going to USF here in Florida to see if they have any idea about what is happening. I pray to God she does! Any who, thought I'd check up on the site... I see no one really looks at this page, but I know how I was struggling to find any piece of info I could on what I was going through and I found hardly anything. I like to leave trails... (No pun intended)...