Kay symptoms and conditions

Like most of you all I am on Topamax 100mg. I am a 27 year old female that has suffered from severe migraines for over 20 years that would last up to 2-3 days and completely debilitated me. I would bleed from my tear ducts from the extreme pressure and I would need to be in a quiet, cold, closed off room to be left alone until the migraine was gone to continue on with my life. It was ruining my life and taking over my day to day routine. I could never really commit to anything without the constant worry in the back of my mind about a possible migraine until I found Topamax. Now on Topamax I went from 4-5 migraines weekly to 1-2 monthly, it is truly amazing, however there is a catch. Although the medication is wonderful and I will never get off of it at the rate of success that I am at, I do have side effects. I have extreme tingling in my extremities, (hands, feet) along with my face. It feels like they are constantly asleep. I also have noticed the poor tasting carbonating drinks along with my taste buds changing with certain foods that I use to be so fond of. I also have a very smokey haze where it almost feels euphoric if I wake up in the middle of the night. I have horrible nightmares of people that I have not seen in or thought of in years, memory loss and spelling issues-all goes away after 3-4 months of uses. I had shortness of breath, however that subsides as well with the use of the medications along with several other side effects. I have lost over 30lbs that is along with diet, so I can't say it is all Topamax. I have noticed little nodules that have been showing up on my hands since I stared taking the medication that I am in ? about I have a call in to my neurologist to see if he has heard of any such thing. Other than that I love the medication, because if not having migraines is one of the side effects-lol I can handle the side effects. I hope that this will help anyone that might have anything similar to what I am going through. If you can shed some light on my nodule situation please let me know. Thanks

I am so glad I'm not the only one that has the crazy symptoms. I am being treated for an inflammation in my optic nerve. I woke up over a month ago now with double-vision. I was on 100mg a day for seven days then went down to 60mg. I feel like I'm high all the time though. I have to take my pills at 7 in the morning and they are still effecting me until about 2 or 3 in the afternoon. I can't drive or do anything that would take a lot of concentration cause I just feel out of it around my eyes. Also I have tingling in my face and arm. Not sure if this is a side effect or if its the possibility that I may have Multiple Sclerosis. (getting an M.R.I. done for further testing) Does anyone else have those tingling sensations?
My vision has almost come back to normal now. The Prednisone has done wonders for that, but I really hate taking it.

I've been taking Relpax for migraines for over a year. I really is a miracle cure for me. I still wake up with headaches but they aren't migraines. I tried taking Imitrex but it was like taking sugar pills. I've wondered about Fioricet since it was given to me when I went to the ER with a major migraine. K.

As a Doctor myself I think drugs are NEVER the answer except in EMERGENT issues in Heroic life saving... YOU however and all individuals are and should be MORE accountable for your own health and STOP DEMANDING the Drugs and look to LIFESTYLE changes in DIET and EXERCISE to achieve the GOALS so necessary for quality and quantity of life.... The tools are at your fingertips ... The almighty internet ... And your OWN imaginative mentation is your TRUE limitation... So TAKE control of yourself and BE accountable .... Sorry so blunt but MORE tough love and Educating people is whats needed.... NOT more drugs....

MDG

I was started on Topamax late 2007 after a week long migraine that did not respond to my usual migraine medication, Relpax 40mg and Xanax 1mg and I needed the second dose 2 hours later. I was given samples of Topamax 25 mg with a schedule to slowly increase the dose. The first 3 days I noticed an improvement in my migraine. By the 4th day, I started coughing. As I increased the dosage of Topamax, my coughing got worse and more frequently. I had to return to the doctor a week later for the cough. I thought I had been exposed to bronchitis because I had worked in the church nursery.
However, the doctor heard a wheeze with my cough and stated I had asthma. This came as quite a surprise because I have never had any lung problems or asthma problems and I am 52 years old. I was referred to a pulmonologist who put me on 2 inhalers (one steroid, one rescue inhaler, nebulizer treatments, chest x-ray, Oxygen to be used a night.
I was still having severe coughing spells every time I moved or tried to talk. I would have to run to the bathroom every time I started to cough because the coughing was so violent that I experienced severe urinary incontinence every time I coughed. I checked the internet and with my pharmacist, both stated that developing a cough was very common with Topamax. After learning this, I slowly reduced the Topamax until I could stop using it. As I was reducing the Topamax, my cough started to decrease. When I mentioned to my doctor about my problems with Topamax, he stated that Topamax did not have any respiratory side effects. I had a brochure from his office for Topamax that stated Topamax should be used with caution with people with lung or asthma problems.
I am now taking 800mg of Magnesium, CoEnzyme 100mg, and Vitamin B 2 100mg twice a day as a preventative. These supplements were prescribed by my neurologist. Since starting these supplements, my number of migraines has decreased.
Kay/redpoppies

I can't believe that this drug is legal and that it has not been taken off the market. I have been on it for a year and couldn't understand why I was gaining weight, nothing helped to get those pounds off. I started at 160 and now at 195 and growing. Three years ago I had triple bypass, weight 150, some of the meds caused some weight gain, but nothing like this. My joints was so sore in the morning I couldn't hardly walk, I just knew I was going to be using a walker if this kept up. BTW I'm 65 female, always been active and busy, now I just do what I have to or can and that doesn't make me happy. I have recently been having crying spells and sore throat, voice lost, and enlarged tongue. The enlarged tongue caused me to do some searching on side effects.....I am so glad I found this page. I haven't taken any puffs of Advair since., that was 3 days ago. My tongue is starting to shrink, my joints aren't as sore, my crying is stopping. The weight is still with me and might never lose it, time will tell. I don't seem as hungry and eating less so maybe there is hope. This is a drug that should have Big warning all over it. Advair has taken a year of my life at this point. If there is ever a law suit I would be the 1st to sign. I didn't have that many breathing issues and really didn't understand why the Dr. put me on it.
I usually check up on drugs before I take them, this one slipped through the cracks, guess cause it wasn't a pill. At this point I just hope that others find this in time and stop using Advair before it ruins their lives.
God Bless
Barbie Kay

Hi Guest 38149-

Several women have experienced trouble with insomnia. Something that has been found to be helpful is the herb: schizandra. I posted some information on this on the UK forum website (its link posted here as well as in the forum sections under supplements.) It helps with a number of things in addition to insomnia. See Lilah Kay's more recent experiences.

I hope that's helpful.
J

I am on 40 mg of Zorcor and have been taking it almost a year. However, I have developed severe pain in my right should and sometimes my hand. I was told by my doctor that the xray revealed arthristis. Both I am convinced that its the Zorcor.

I could not take Lotrel due to retension of fluid and so Heart dr. put me on Lisinopril twice daily. I do not find a cough. I do however feel more tired. I had not other side affect and I have been on it for 3 months now and it is to aide in my atrial fibrillation. I had a cardiversion and so far rhythm is ok but time will tell. I am also now on Rythumol twice daily 225 sr. this is a medication to help hold rhythum steady. What a problem as one needs be on the coumadin for ages in case the a fib goes out of rhythm. I just don't have much energy and felt bettter before I added the rhythumol to the other drugs I am on for Bl P... My heart is good generally at age 69. Thanks, Kay

Kay,
I understand the anxiety you are going through and it is very difficult when people do not acknowledge Yasmin to be the cause of your symptoms. I felt alot like you 2 months post Yasmin and I honestly felt like I couldn't get through another day. Try not to take on any added responsibilities and put as little stress as possible on yourself right now because you need all the energy to get better. Try your hardest to focus on the present and take one thing at a time. I know it's hard--I've been there--but it does get better. Best wishes.

Kay, I completely understand your exhaustion over the time it takes to feel better after getting off Yasmin, but you need to TRUST that although you dont feel it, everyday is a day closer to being the 'old Kay'. It has now been 4 months for me and I am only really feeling like my old self now, you need to take one day at a time. By the sounds of it, you are currently either ovulating or pre-menstrual...you always feel worse around these times. I understand that knowing you will get better soon isnt always enough to make you feel better right now. The biggest thing is to TALK to your friends and family. They need to know exactly how you're feeling. Get them to read posts on this website. I'd also recommend you make an appointment to see a psychologist. This is not because anything is wrong with you, but as a result of taking Yasmin you are suffering side effects that you currently have no control over. I have been seeing a psychologist for the first time in my life over this whole experience and it has helped enormously. He reminded me that I need to stop being so hard on myself and that I am making gains....its' always good to have other people's views on our progress as it's often difficult for us to see.

I'd also recommend you cut out any caffiene, white sugar, white flour etc as it only makes you feel more on edge.

I found meditation helpful as it helped calm me down.

You need to know that you're not alone. All Yasmin Survivors out there are sharing your pain, and we all have brighter times ahead!!!

!!! To kay and every woman who got off Yasmin a few weeks/months ago !!!

It DEFINITELY needs time to get off all the symptoms we got.

After two months off Yasmin I felt exactly the way you do now kay!! I didn't believe then, I would ever get better and was completely in despair!!!

But let me tell you that now, 4 months off Yasmin, EVERYTHING has gotten better, it's not perfect, yet, and I think it will take much more time to get really healthy again, but it WILL!!

I'm so thankful about all these posts here, especially of the women who had gotten off Yasmin months before me and helped me getting through the hard times with pep talking and telling their stories, and every one of them said the same:

It's taking MONTHS to get better, but most women felt VERY MUCH better already at 3 months, and after that it gets better and better every month. And this is how I'm feeling too today!! Wouldn't have believed it a few months ago, but I'm really doing better.

The anxiety and feeling faint etc. come back some days, but all that doesn't last that long as before and it's NOT AT ALL that heavy as it was! I feel like I'm slowly but surely getting back my old life!!

Hair loss, acne, and not having a period over a long term I experienced too. But that all ist just the hormones getting back in balance, maybe a little bit of PCO-Syndrome. But your gyn shouldn't tell you, it's all just because of anxiety. Never heard of anyone who lost his hair only because of anxiety!! Please don't go to this gyn anymore, search for another, better one immediately!!!

Getting a blood test done to see how your hormones are doing is what she should have done and not to tell you such shit!! My doctor did such last week, I think I'm getting the results next week. He told me, that hair loss, weight gain (I'm experiencing, too, I fear...), acne, etc. could be a sign for a little too much male hormones in your blood. After checking that you can take some medicine for that (BUT NO BCP AT ALL, I'll never take such shit again I swear!!!) and it will get better, perhaps it will get better by itself after a few months.

Please give your body time to recover!!

I had been on Yasmin for terrible 5 YEARS!! I can't believe that today, but I was really!! And now it seems, that this pill had done so much harm to me....

To your boyfriend: Everything you need right now is some support during these hard times and not a boyfriend who doesn't want you around anymore and doesn't even believe you!! my husband was at my side everytime and during everything the last 6 months, and it was like hell, what he and me had to go through. But I can say that the only thing that really helped was, to have him by my side, believing me and helping me through everything!! If your boyfriend really loves you he should do the same and in a few months you maybe the old kay21 again!!

Ok, a long story.... I hope it helps some of you, who are still in need of support through the hard times getting off Yasmin!!

All the best to everyone out there!!

Silke