10 replies to this topic

[KMitchell25]

Hey everyone,

I had the Pertussis and Flu Vaccinations on Monday around 5pm. I took my Xyrem that night and had a terrible reaction. I had been on 3.0 2x per night with ZERO side effects for 4 days already without a problem. Now I'm having speech issues and just feel like everything is extremely far away- I'm having major issues talking at work and just functioning in general. Xyrem said that there should be no reaction between the vaccinations and the medicine- but my question is could the vaccinations be worsening my N symptoms which is in turn causing the reaction? They may not be connected, but this is extremely peculiar. Here's the breakdown- please tell me what you think, or if you have ever heard of anything like this.

There was a question on the Pertussis questionaire that asked "Do you have a neurological disorder" and I answered Yes- Narcolepsy. they didn't say anything about it so I assumed it was okay. This popped back into my mind for some strange reason today and now I want to know why they needed to ask that question...

Prior to Monday // No side effects // Feeling more alert during the day // 8 hours of sleep

Monday // 5PM Pertussis and Flu Vaccinations // Took Xyrem at 10 // Woke up with nausea and unable to sleep- tossing and turning and body all tingly // Slept 3-4 hours total

Tuesday // Worked and took my Vyvanse 40mg // Felt tired since I didn't get as much sleep but was still fairly "mentally sharp" // Took Xyrem at 10 // Fell asleep for 15 minutes then was up until 1:30 when I took second dose // Fell asleep and only slept for 2 hours // Woke up and went back to sleep for a very short time before my alarm went off for work

Wednesday // MISERABLE // Problems with speech and blurred vision // Issues typing // Slow reaction time // Took Vyvanse this morning

I'm just so confused as to why this suddenly is happening when I was actually getting relief- do you think that I could be reacting to the vaccines, and that could be what is causing all of my issues? I called the nurse at my Sleep doc's office and I got the crappy nurse who doesen't listen- she didn't even get that I was asking about the vaccine and N- she just got really concerned when I mentioned the Xyrem that there was a reaction between the vaccine and medication. Why would they ask "do you have a neurological disorder" question if it couldn't cause some issues? I'm not well.

Please let me know what you think

Kristen

[DeathRabbit]

Well, I hate to push this theory, but as Narcolepsy is autoimmune, and vaccines tweak the immune system, it may have renewed it's assault on your orexin system. It's also just possible that you are having a rough slump. I go from periods of feeling semi-normal, to feeling as if in a stupor, like I'm constantly drunk/blazed out of my gorde. There is also a possibility with some vaccines of actually contracting the virus you are attempting to prevent. So you might be coming down with the flu. I hope you feel better soon! Keep us posted.

[MINItron]

I have noticed that I tend to react poorly to vaccines. I usually feel like death warmed over for two or three days at least for just about any vaccine other than the flu vaccine. The tetanus vaccine is a particularly rough one. I don't take Xyrem, but I know that when I am under the weather my sleep gets all screwed up, and I can get really out of it.

[KMitchell25]

Thanks for the input!! I definitely went from a high to the lowest I've been. Had I known this could have been the reaction I wouldn't have gotten the vaccines until getting thru the startup of Xyrem. I think just understanding more about how sensitive I am now is going to take some getting used to, and becoming more educated will take time. I called the CDC to ask about the neurological question, and with the pertussis dtap vaccine it does put us at a fairly increased risk of Guillain Barre Syndrome but I really doubt thats what is going on although some symptoms are similar. Think the vaccine just caused changes with my body like you said and made me react differently to the Xyrem... Definitely felt like the risks should have been spelled out before giving the vaccine but can't expect that moving forward. I found out that what I thought were occasional seizures are actually cataplectic attacks- few and far between and I have always had the same feeling when they are coming on... In the past year I have figured out sitting down and deep breathing has helped them not to progress. Maybe the slurred speech, inability to focus my eyes, and the muscle weakness stem from that? It is just hard to deal with (as I know you all understand) to consciously know what's going on and accept that I have no control over it. I'm generally fairly articulate and well spoken, and when I have had bad days with blips many times, today was absolute hell due to being so shaky, and feeling weak but tense at the same time? Feeling like an outsider in my own body and mind was a lot to swallow when it was to this extent. If i dont see any improvement or if my symptoms get worse im definitely going in to see my doctor. Hoping for a better night tonight and a good day tomorrow!!

Thanks for listening!!! Venting is good, but I hate to be a Debbie downer! Just get scared sometimes as this is still so new for me.

Hope all is well for you!

[KMitchell25]

I have noticed that I tend to react poorly to vaccines. I usually feel like death warmed over for two or three days at least for just about any vaccine other than the flu vaccine. The tetanus vaccine is a particularly rough one. I don't take Xyrem, but I know that when I am under the weather my sleep gets all screwed up, and I can get really out of it.

The tetanus is in the pertussis, and the CDC told me that is what puts us at a higher risk for the GBS... I'm going to research more on any vaccines or medicines before taking them. Sorry it made you feel bad too, but I'm not going to lie- it makes me feel better to know I'm not the only one who has felt so wacky! The Xyrem is out of my system so fast that it must be the vaccine. I had the flu shot for the first time when i was in the hospital with viral meningitis so i wouldnt know if i reacted since i was so crummy anyway. They think thats what worsened my N to the point its at now. Thanks for sharing! Hope one day that my responses will help someone feel better too!

[Hank]

I deal with vaccines as part of my work. The TdaP (tetanus pertussis) vaccine mentions/asks about Seizures because people with an underlying seizure disorder may be more prone, especially if they spike a fever. Febrile seizures can occurr in people who do not have a seizure disorder. But even then, vaccination is not always contraindicated in those patients if their seizures are well managed. This was more likely with the old (whole cell) DtP vaccine, and far less likley with the new (a-cellular) TdaP.


Also, it is common to feel a liittle "off" of "crummy" after vaccination. This is because your body is Seroconverting (making antibodies) in response to receiving the vaccine. While the vaccine is not making you sick, your body is still strained a bit while it is launching an immune response to the vaccine. That is temporary, and actually a sign that your immune system is doing its job. As long as it is within normal limits, there is not a problem.

My cataplexy is always worse when I have a cold or I am stressed. And the lower doses of Xyrem can be unpredictable as your body is adjusting. I am now on 9g/night (4.5 x 2) Xyrem for the past 6 weeks. My night are trending better, but I still rarely have 2 good nights in a row. The lower doses were a real mixed bag for me- and I am thankful to be past that stage.

You are right to question everything- that is smart. It is so hard to tell what is a symptom, a side effect or something brand new. There are so many variables: sleep, food, stress, general health. It is exhausting to keep it all straight.

Severe complications from a vaccine are rare- especially in healthy adults. But N is also rare. The only problems with vaccines possibly "causing" N which have any validity is with a particular H1N1 pandemic flu vaccine used in Europe. But causality has not been established. And N is caused by an autoimmune response possibly following an infection. And cases of N were reported in individuals to got H1N1 flu, but did not get the vaccine. So it is just hard to tell. Bottom line to me, the gene must be there waiting to happen. And if I already have N, I can't get it a second time. My orexin/hypocretin is allready long gone.

I do hope you are feeling better and I hope you are having a good response to Xyrem. It has made a huge difference for me. And I got my flu shot last week- I felt a little crummy but then just fine. I would feel a lot worse with a bad case of flu.

[KMitchell25]

Hank- I'm feeling a little better today and got about 6 hours of sleep. Not feeling on pins and needles as much. yay! I know I over reacted but everything was just so new- first bad night on Xyrem and then the other symptoms on top of it was a little intense.

Not only people with epilepsy are at an increased risk of issues with the vaccine, but they may be at a higher risk idk. I didnt get the full info sheet just the questionaire... They were available but being new at this I didn't think anything of it. Definitely going to research further. After talking with you guys it has made me realize that not only will I be trying to control my EDS but also needing to take everything into consideration since my body is reacting differently now! I've been blessed this year with fairly good health, and it's almost exactly a year ago that my N symptoms started getting worse. Just not something I would have related but now I totally see why it does!

• Talk to your doctor if the person getting either vaccine:
- has epilepsy or another nervous system problem

The questionnaire was worded differently and just asked do you have a nerological disorder.

Still not feeling up to par today but better is always good!! Going to the museum tomorrow, so I'm very glad it looks like this is on its way out! I had taken vaca at work today and tomorrow and was hoping not to be in bed tired and crummy for my long weekend with my husband.

So you made it to the full dose!! I hope it keeps getting better for you like they say as time goes on. Even on the low dose I have noticed I'm better upon waking... I know that as you increase the dose you increase side effect risks... Sounds like it has been a real game changer for a lot of people!! Fingers crossed for everyone!!

Appreciate all of your help, it's so nice to have people to talk to that fully understand!! Hope all is well

[Megssosleepy]

Yes being at 4.5x2 is a life changer! I found that I stayed at the lower dose much to long since I was getting relief from the side effects. My body got way to accustomed to being at the lower dose that when I went up I had some trouble... Now that the Prozac is almost out of my system and my body is used to the Xyrem I feel blue skys are ahead!

Today I feel that way anyhow lol

[MINItron]

Also, it is common to feel a liittle "off" of "crummy" after vaccination. This is because your body is Seroconverting (making antibodies) in response to receiving the vaccine. While the vaccine is not making you sick, your body is still strained a bit while it is launching an immune response to the vaccine. That is temporary, and actually a sign that your immune system is doing its job. As long as it is within normal limits, there is not a problem.

In the military we get all of the lovely vaccines, and sometimes they get a little happy with them and give too many at once. I have had one occasion since the onset of my symptoms, but before my diagnosis, where I had multiple vaccines that knocked me down so hard that I actually missed work. Then when I had barely recovered from that I had to get my smallpox vaccination. It's a wonder I wasn't having cataplexies then. The smallpox vaccine virus made me miserable the entire time I was infected. As I look back since I have had the symptoms of narcolepsy illnesses have hit me harder, and I have had more strange reactions to them than I ever did before.

[DeathRabbit]

In the military we get all of the lovely vaccines, and sometimes they get a little happy with them and give too many at once. I have had one occasion since the onset of my symptoms, but before my diagnosis, where I had multiple vaccines that knocked me down so hard that I actually missed work. Then when I had barely recovered from that I had to get my smallpox vaccination. It's a wonder I wasn't having cataplexies then. The smallpox vaccine virus made me miserable the entire time I was infected. As I look back since I have had the symptoms of narcolepsy illnesses have hit me harder, and I have had more strange reactions to them than I ever did before.

Yeah that kinda irritates me that they treat you guys like that. Defenders of our country should be treated with more respect.

[MINItron]

Yeah that kinda irritates me that they treat you guys like that. Defenders of our country should be treated with more respect.

When you go to some of the places that I have been you need all of your shots, and unfortunately sometimes there just isn't enough time to spread them out. A more normal sleeper, and immune system shakes it off with no problem, but I have a hard time with it. It just comes with the territory. I would rather put up with a few miserable days than come down with typhoid or yellow fever.