headache with cystoprotek?

[sweetangel2080]

have had a 3 day migraine- I do get them normally but for a day - it started with the cystoprotek - gonna try a day or two without it and see how I do. I really want to take the cystoprotek though - would freezing it helps?

[Katrina]

Could you be allergic? HOpe you feel better soon. I hope someone here has the answer for you! :grouphug: What other things have triggered your migraines? For me...hormones and stress were the only triggers I was sure of. Some herbs can effect hormones and although I don't know about the ones cystoprotek maybe you naming your other triggers can help us help you. :grouphug:

[sweetangel2080]

My triggerrs are normally: extreme stress, less or more sleep. milk and cheese and food with lots of fat ie chips etc.
Done none of these - well going to try and take no cystoprotek then take it again just to make sure - I really don't want to have to be on Elmiron all my life!

[dminton]

Sweetangel,

Did you find out if it was Cystoprotek that gave you the migraine? I tried my first capsule yesterday, and the second today, and have had a worsening migraine that started this morning, after not having one at all for at least weeks. I wonder?

Diana

[taylorcpa]

I am thinking this has given me a headache. I took one the first couple of days and on the second day of taking two, I got a headache that will not go away. Not a migraine, just a headache. I am going to freeze them (saw that for stomach upset) and go back to once a day for a while. I really want this to work. I have allergies and other inflammation issues and based on what I have read, this might help. If freezing doesn't work, I am going to email the company.

[dminton]

What's really weird is that I was all itchy last night before falling asleep. It made me really nervous. That never happens to me. The only thing new and different is the Cystoprotek, and that was the night of the second day. I think I'm going to skip it for now and maybe go back in a few days and try again. With a history of fish allergy, I am suspicious.

Diana.

[taylorcpa]

I evidently did not do my research before I ordered the Cystoprotek. After doing a search on the internet, I found that the Sodium Hyaluronate may be causing my problems. At http://health.yahoo.com/drug/d04329a1, it says "Talk to your doctor before using sodium hyaluronate if you have an allergy to birds or bird products, feathers, or egg products." That's it for me - I am really allergic to feathers. That may be your problem as well.

I read the product information that came with the Cystoprotek and it did not say anything about the above. I ordered three bottles from the ICNetwork, so I hope they will let me return the two unopened bottles.

[dminton]

I think the hyaluronic acid (spelling?) is derived from chicken combs, if you can believe it. Maybe that's the problem.

Diana.

[vickisue]

have the headaches resolved?
i am still trying to sort out whether to try cystoprotek or bladder-q(i contacted my dr.,and she said they are both equally effective),but i don't want to take a medication that could possibly cause headaches!please let me know!

[dminton]

Hi Vickiesue,

Everyone is SO different; I know of two women who take it and love it, no side effects and it works well for them. Unfortunately, this is all trial and error. Good luck whatever you decide. You could also call the company and express your concerns, and let them know if you have any allergies.

Diana.

[sweetangel2080]

hi
gosh, it seems a lot of people have troubles with it.
I tried it again for 2 days with just 3 tablets at 1pm - ok so far. Going to try it again this weekend to see how it goes. I had sodium hyaluronate instills and was fine, but it might me different orally. I

[taylorcpa]

Vickisue,

Are you allergic to birds, feathers, or eggs? I also read that people allergic to shellfish might have problems. I would call the company and ask for a sample. I did, but did not have the headaches until I opened the bottle I ordered (go figure).

[vickisue]

well,i am not allergic to feathers, or eggs,but i don't know about birds(?)
if you know you are not allergic to 2 out the 3 possible categories of concern,then should i not worry?

[ICB]

Hello Everyone:

I started taking Algonot Plus about 4 1/2 years ago; then switched to CystoProtek when the company came out with this new product. I've done fabulously on both products; except for stomach upset, which went away with freezing the capsules.

I started getting migrane headaches about a year ago and from what my neurologist had to say, it seems very common with IC and fibromyalgia patients. I used to take Elavil and that helped with the IC pain, frequency and burning. However when the migranes got so bad, the neurologist decided to take me off of Elavil (I was so scared) and start me on a very low dose of Topamax. It was a GREAT decision, by a great doctor!!! :bow: The migranes went away, the IC symptoms are still under control and the best part is that I lost 30 pounds. :woohoo:

But to get back to CystoProtek - those who cannot take a product with sodium hyaluronate, you can try their Algonot Plus formula (it really works well for many IC patients too). The Algonot Plus formula is everything CystoProtek is, minus the sodium hyaluronate.

If any of you are allergic to fish, the Chondroitin in both Algonot Plus and CystoProtek comes from shark cartilage and may cause some of you problems.

Overall, I agree with those of you who are going off of the product and waiting until you feel better to try it again to see what happens. I would call the company and report what you are experiencing; if it happens again return the product.

I suggest that you consult with your healthcare provider if you believe that the information above may be helpful; your healthcare provider will determine the appropriate treatment regimen for you.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Good luck to everyone.

ICB :flower:

[asilva]

Sorry to hear that you are having problems with Cystotoprek. I started it about a week ago, and am doing fine with it so far. I guess the allergy thing has a lot to do with the adverse reactions.

[__KATIE__]

Hi everyone,
I had some adverse reactions to Cystoprotek, mainly gastritis.
I started it on 1/21 and stopped it on 1/24. I also started taking prozac 20mg qd on 1/21. I was also taking an herbal/homeopathy tincture called UTI-Clear from nativeremedies.com (which I've been using for over a year to prevent UTI).
I started getting stomach pain in the evenings following start of Cystoprotek, and then the night of 1/23 I woke up with a slight burning sensation on my face and arms, so of course I stopped the supplements, but kept taking the prozac. On 1/25 I started to feel better and the burning sensation on my skin stopped, and my IC symptoms lessened as well. I e-mailed both ICNetwork and nativeremedies regarding this situation 1/26, but no one has yet to answer back. Until then I'm staying off the cystoprotek until I get some more answers.
Anybody else with these symptoms? :help:

[dminton]

I tried Cystoprotek twice. The second night, I felt prickly all over my skin, without rash or hives. It wasn't really an itch, but a prickly sensation. It was rather disconcerting, so I stopped the Cystoprotek. I also have a history of allergy to fish, so it made me nervous.

Diana.

[BigFig]

Okay, I had the same reaction to the Cystoprotek. It was a tingling sensation in my arms, hands, face and neck. Not to mention the fact that I couldn't get to sleep the two nights that I took it. I sent an email to Algonot from their website and also put a call in. I received a call back on Sunday (the following day) and was told that no one had ever reported the symptoms that I was experiencing and was asked to send a list of the meds I am cuurently taking and the amount of Cystoprotek that I had taken. When I told the rep from Algonot the amount that I had taken (following the recommended dosage on the bottle) she said that there should of been an instruction sheet included with my order stating to start with a lower dosage. I then told her that I had ordered from the ICN Shop (that's another story). She told me to stop the new supplements (I had also ordered Aloe Vera) and to wait a couple of days and then start with only one of the supplements and only one pill a day and then increase it, but as soon as I took the Cystoprotek again I had the same reaction, so I have quit both until I here back from the rep. Evidently the Dr. who invented the supplement is in Greece and she was going to be talking to or corresponding with him and getting back to me. I haven't heard anything back yet, but was glad to see that I am not the only one having a reaction to the supplement. Please let me know if you here anything and I will do the same. I was not able to take Elmiron due to an allergic reaction so had alot of hope for the Cystoprotek.

P.S. I am allergic to Sulfa but not shellfish.

[__KATIE__]

I'm glad I'm not the only one in the boat about this one!!
The weird thing is I'm not allergic to either shellfish or sulfa, the only thing I notice as far as any shellfish reactions go is when lobster juice touches dry skin it itches but no rash.
Thank you BigFig and Diana for your input on your experiences, please write back about your outcome with your query to the rep!
I guess I'll be asking my doctors lots of questions in the next few days.
Last night was startling, I woke up and my nerves were on fire, and had a heated tingly prickley sensation all over. I felt ill to my stomach and my IBS started acting up, it took about a half hour for the sensation to stop. What's up with that?
I received a call last night by my gastroenterologist telling me that the gall bladder u/s revealed "sludge" crystals. I had that u/s done 01/09/06! It was originally ordered because of nagging pain in my upper rt. quadrant and stomach on 12/23/05. Then four days later I had a colonoscopy due to finding blood, so the previous problem took the back burner and so did my bladder, I was having a flare up through this whole ordeal.
I'm glad everybody here knows how IC flare ups hamper your ability to funtion, because none of my doctors understand anything about IC except for that it's painful and there may be a correlation between flare ups and endocrine release.
I'm waiting to see a urogyn in Mt. Auburn Hosp., Cambridge, MA she is the only one my urogyn knows that treats IC patient, but she's been on maternity leave since 10/05 and doesn't return till 04/06. So I'm just hopeful while persevering through the flare ups.

Sorry I just divuldged all my probs on here, after all this is about cystoprotek, but i find peace knowing everybody here understands what I'm going through with getting a doctor with knowledge how to treat IC. :grouphug:

Here's part of the response from Jill Osborn :

Thanks for your letter. Unfortunately, I don't have an answer for you
about specific interactions and you really should email the company and
ask Dr. Theoharides for his response as well. You can find their
website at: http://www.algonot.com. However, I can offer that sometimes
the olive kernal seed extract can be difficult to tolerate if it's
warm... and thus it has been suggested that if it's kept chilled in the
fridge that it can help.
Also... the homeopathic tincture is suspicious to me.... and since IC
isn't infection anyway... these are usually a waste of time and money
IMHO.
I'm really not sure about the side effects of prozac. Good to talk with
your pharmacist about that.

[BigFig]

I'm glad I'm not the only one in the boat about this one!!
The weird thing is I'm not allergic to either shellfish or sulfa, the only thing I notice as far as any shellfish reactions go is when lobster juice touches dry skin it itches but no rash.
Thank you BigFig and Diana for your input on your experiences, please write back about your outcome with your query to the rep!
I guess I'll be asking my doctors lots of questions in the next few days.
Last night was startling, I woke up and my nerves were on fire, and had a heated tingly prickley sensation all over. I felt ill to my stomach and my IBS started acting up, it took about a half hour for the sensation to stop. What's up with that?
I received a call last night by my gastroenterologist telling me that the gall bladder u/s revealed "sludge" crystals. I had that u/s done 01/09/06! It was originally ordered because of nagging pain in my upper rt. quadrant and stomach on 12/23/05. Then four days later I had a colonoscopy due to finding blood, so the previous problem took the back burner and so did my bladder, I was having a flare up through this whole ordeal.
I'm glad everybody here knows how IC flare ups hamper your ability to funtion, because none of my doctors understand anything about IC except for that it's painful and there may be a correlation between flare ups and endocrine release.
I'm waiting to see a urogyn in Mt. Auburn Hosp., Cambridge, MA she is the only one my urogyn knows that treats IC patient, but she's been on maternity leave since 10/05 and doesn't return till 04/06. So I'm just hopeful while persevering through the flare ups.

Sorry I just divuldged all my probs on here, after all this is about cystoprotek, but i find peace knowing everybody here understands what I'm going through with getting a doctor with knowledge how to treat IC. :grouphug:

Here's part of the response from Jill Osborn :

Thanks for your letter. Unfortunately, I don't have an answer for you
about specific interactions and you really should email the company and
ask Dr. Theoharides for his response as well. You can find their
website at: http://www.algonot.com. However, I can offer that sometimes
the olive kernal seed extract can be difficult to tolerate if it's
warm... and thus it has been suggested that if it's kept chilled in the
fridge that it can help.
Also... the homeopathic tincture is suspicious to me.... and since IC
isn't infection anyway... these are usually a waste of time and money
IMHO.
I'm really not sure about the side effects of prozac. Good to talk with
your pharmacist about that.
Hi Katie, I stopped the Cystoprotek for a few days and then took only one capsule and still had the tingling sensation mostly in my arms, hands, neck and face. Not as intense as it was with taking the recommended dosage on the bottle. So I stopped it completely. I finally heard back from the Vice President of Customer Support. Her response was that "No such problem ever reported"? And that there is no apparent interaction with the meds that I am currently taking and to start with one capsule in the pm and increasing to no more than 4/day over a few weeks. This was the advise that the doctor gave to her to give to me. I emailed her back and told her my reaction to just the one pill and that I was going to ask other to inform them of their reactions to the supplement. So please do so. You can email her directly from the site or to denise@algonot.com. You can also call her if you would like at (800) 254-6668. I'm not sure what to do now, but like I told her in my email that I didn't think I should take it with the reaction I got from taking it. So we will see what she responds. Take care for now....

[taylorcpa]

I emailed Denise about my headaches. I think they are lucky that no one has had a serious allergic reaction. (at least that we know of).