Noisy Cricket

Who here has seen the movie Men in Black?

Remember the scene when Will Smith asks Tommy Lee Jones for a gun and TLJ hands him a teeny tiny lil gun called the "noisy cricket" and Will looks at him like TLJ has gone crazy. A few scenes later, after Will fires the gun and finds out that it packs a helluva punch he looks at it like "holy wow!!!"

Still with me?

I refer to ibuprofen as the "noisy cricket."

I suffer from headaches and migraines. I have since I was a teenager. Select migraine meds work, usually in conjunction with Advil or asprin... well, before ITP of course. Now I have joined the ranks of Team Tylenol.

Yesterday I woke up with the headache from hades. Terrible pain. So I took some ITP approved Tylenol and I waited.
And I waited.
And I waited.

An hour later, I took some more Tylenol.
And I waited. And waited. And waited.
And waited.

An hour after that, I said "f*ck it" and I took 3 Advil.

Yup. You read that correctly. I took some Advil.
And not a lil bit of Advil. I took 3 extra strength Advil.

It worked. My headache went from pounding agony down to tolerable ache. SUCCESS!!!!

Until I woke up this morning, back in agony.

So I took 2 Advil (at 6:30am). And then, I took another 2 at 12:30pm.

And then I took another 3 at 6pm.



Why am I telling you guys this? Well, I'm confessing my ITP sins.

The only thing keeping me from pure agony is Advil.

Tylenol is a joke. It's an evil red and white joke. I don't know who Tylenol works for, but it sure isn't me.

My platelet count has been on a roller coaster for the past couple of weeks. It just keeps bouncing between high 80s/low 90s and low 50s. On Monday it was 90.
Which is how I have justified my Advil consumption today.

Am I completely stupid?
Am I a terrible person? Do I have some sort of death wish?

*weeps* I just wanted the pain to go away.


Okay, that's all I had to say. I just needed to get that off of my chest. The first step to getting help is admitting that you have a problem.

Hi, my name is Kay. I'm an Advil Addict.

Please be careful with the ibuprofen. You should ask your doctor if there is a migraine med you can safely take. I have recently had a recurrence of migraines after years of freedom from them. Tylenol is, indeed, useless for those. I take caffeine and aspirin (a definite no-no for ITP patients) when they hit, but then I pay for it for days with stomach pain, and my nurse husband says I will have a calamitous bleed one day. Years ago, Imitrex was the lead drug for migraines. I haven't kept current on it, but you may find there is something safe and effective. Before she was an ITP teen, my daughter, in first grade, was having migraines, which were controlled by taking periactin every night. It is an antihistamine. I am not sure it works for adult migraine, but it would be worth asking. Good luck.
Norma

No, Tylenol doesn't work. I don't think what you did was so horrible, but then I am one that bucks the system. On a daily basis, I take two 500 mg's Naproxen, aspirin and two Advil PM at bedtime, in addition to all of my other meds. As long as I don't exceed the recommended daily amounts, I do what I have to do.

Kay, how are your counts? I wouldn't worry about advil if my counts were pretty decent. But with danger counts, like under 30, I think it might be best to avoid.

I can't take aspirin or ibuprofen because it makes me cough a lot. I guess it is sort of an asthmatic allergic reaction? So I only take tylenol. But it does reduce the migraines I get, I'm lucky with that. I also got hives the last time I took codeine, about 30 years ago. So if I have some serious pain one day I don't know what I will be able to take.
Erica

Erica: On Monday, my count was 90. Up from 50 the previous Monday.

My splenectomy was in February, I was off prednisone by April and I haven't had any IVIg since May and it seems like my "new normal" will be somewhere in between 55 and 85 (which I can live with).

Sandi: It's good to know that I'm not the only rebel around here! And no, it doesn't surprise me one single bit that you'd be rebelious!

Norma: Imitrex is a miracle drug. I rank it up there with Dilaudid and Zofran. Unfortunately, Imitrex is also extremely expensive (and I seemingly have "lost" my health insurance temporarily) so I've been taking Maxalt. It works, but not as awesomely as Imitrex did.

Luckily, I woke up today headache free so I don't have to tempt the Holy Thing Atop the High Thing by taking more Advil.

Thanks for understanding y'all. My friends were all super displeased with my Advil taking and I couldn't convince them that I didn't have a choice. Pain trumped platelet count at that exact moment.

Quality of life is more important to me than anything else, which is why I do what I have to do. What good is life if you can't live it?

Good luck with your next count, Kay!

I'm right there with you, Kay! I take Advil/Motrin, too, despite my platelet counts. Tylenol does nothing for me, so when I have any type of ache, I reach for the Motrin. And I don't even think about my counts before I take it. I know I should probably consider it, but when I'm in pain, I don't care. I do what I have to do.

~Lauren

You'll get no "for shame" from me, I also take Advil sometimes. You have to do what you have to do.
ITP is only one aspect of life, everything doesn't screech to a halt while we 'count'.

Sorry that you cannot get Imitrex. I've had migraines for 40 years and it knocks 'em right out.
.

I don't know if ultram (tramadol) would help with your headaches, but it is, in my view, an effective pain-killer--and one that isn't on the no-no list. It does require a prescription. It got me through two knee replacements, sciatica, and some other aches and pains. I don't get migraines, so I don't know how well it would work for that.

I agree on tramadol. Has brought my life back to "normal" after going through gall bladder surgery and being diagnosed with ITP. Tylenol did nothing for me unless was taking way more than the recommended dosage, then they moaned about liver damage cause taking too many so prescribed tramadol.

Never heard of it before but all it does is block the pain sensors in the brain...so pain probably still there but brain area doesn't recognize it so I now can function. Added side effects...mood enhancer (which definitely is nice). Have gone on and off as needed.

Hope something works for you.

No this ain't Tylenol, folks. This is an opioid and must be used with great caution!
It is addictive. It must be tapered. It has interactions with other drugs, including alcohol. It has lots of potential side effects, including constipation and lowering seizure threshold. Use it as cautiously as you would use morphine, hydrocodone, oxycodone, oxycontin, etc.

Like oxycodone,etc., Tramadol is often combined with Tylenol (e.g., Ultracet) so if you are looking to avoid Tylenol, be careful how it is prescribed.

For some reason, different people have adverse reactions to different painkillers, and some do well with Tramadol who might have headache or nausea with another. But the risk profile is the same as for other. For my mother-in-law, when she had end stage cancer, Tramadol caused intense nausea. Every body is different.

I take Norco, which is a stronger version of Vicodin. It is a mix of hydrocodone and acetaminophen, but the dosage of acetaminophen is lower and dosage of hydrocodone is higher. I have always wondered why they don't use hydrocodone and ibuprofen instead, since that would be a better inflammation-reducer. If anyone knows, please enlighten me.

Tramadol (ultram) is not an opiate, not a narcotic, though it has some of the pain-killing effects of a weak opiate. (So say my research, and my PCP, my orthopedic surgeon, and my hematologist--all of whom are so happy that there is one pain-killer that works for me. Opiates make me very, very sick.) Tramadol is not addictive. I've taken it for years when I have needed a pain-killer (like after my knee replacements). I've never been advised to taper it. There is a big list of possible side-effects, but no one I know who uses it (including me) has suffered any of them. I suppose if you are prone to constipation, it could constipate you--I've never had that problem. Since our bodies are all different, I'm sure some people have had negative reactions to it--the way I have negative reactions to opiates--though probably not that severe.

I have 50-mg. pills. After my November knee replacement, I took a pill every 4-6 hours, which is high use. Now--for sciatic pain, I cut the pills in two and take one when and if my sciatica keeps me awake--maybe 2-3 times a week.

Of course, one must be careful in using tramadol.

I find it doesn't eliminate severe pain, but it makes it more tolerable.

Oh, by the way, Lori, I haven't noticed any mood-enhancer side-effects of tramadol. But when I have less pain, I'm in a much better mood!

Karen, the difference is semantic. I stand by what I said:

Tramadol hydrochloride (...) is a centrally acting synthetic opioid analgesic used to treat moderate to moderately severe pain. -Wikipedia

An opioid is any psychoactive chemical that resembles morphine in its pharmacological effects. Opioids work by binding to opioid receptors -Wikipedia

ULTRAM® (tramadol hcl) contains tramadol, a centrally acting synthetic opioid analgesic. Although its mode of action is not completely understood, from animal tests, at least two complementary mechanisms appear applicable: binding of parent and M1 metabolite to μ-opioid receptors and weak inhibition of reuptake of norepinephrine and serotonin.
- RxList.com FDA clinical pharmacology

Tramadol is not an opiate, but it is an opioid, and like opiates it acts on the same receptors.

Although the term opiate is often used as a synonym for opioid, the term opiate is properly limited to the natural alkaloids found in the resin of the opium poppy (Papaver somniferum). In some definitions, the semi-synthetic substances that are directly derived from the opium poppy are considered to be opiates as well, while in other classification systems these substances are simply referred to as semi-synthetic opioids. -Wikipedia

The term "narcotic" is defined differently depending on context and governing authority. Generally tramadol and hydrocodone are either BOTH OR NEITHER classified as narcotic, though I have seen tramadol classified as "narcotic-like"... whatever that means.

Tramadol has mu-opioid agonist activity. ULTRAM® (tramadol hcl) can be sought by drug abusers and people with addiction disorders and may be subject to criminal diversion. The possibility of illegal or illicit use should be considered when prescribing or dispensing ULTRAM® (tramadol hcl) in situations where the physician or pharmacist is concerned about an increased risk of misuse, abuse, or diversion. Misuse or abuse poses a significant risk to the abuser that could result in overdose and death (see Drug Abuse And Dependence and OVERDOSAGE). - RxList.com

Tramadol may not be derived from poppies, but its pain-killing properties come from being similar enough to act on the same receptors. Like all potentially habit-forming pain-killers, if you need them you take them, but never take them lightly!
Tramadol works for a lot of people because it is synthetic. I am glad it works for you.

Tramadol's mood benefits are related to it being a weak SSRI/SNRI like many of the common antidepressants today. They only work if you are deficient to begin with in serotonin and norepinephrine.

KayL wrote: Who here has seen the movie Men in Black?

Remember the scene when Will Smith asks Tommy Lee Jones for a gun and TLJ hands him a teeny tiny lil gun called the "noisy cricket" and Will looks at him like TLJ has gone crazy. A few scenes later, after Will fires the gun and finds out that it packs a helluva punch he looks at it like "holy wow!!!"

Still with me?

I refer to ibuprofen as the "noisy cricket."

I suffer from headaches and migraines. I have since I was a teenager. Select migraine meds work, usually in conjunction with Advil or asprin... well, before ITP of course. Now I have joined the ranks of Team Tylenol.

Yesterday I woke up with the headache from hades. Terrible pain. So I took some ITP approved Tylenol and I waited.
And I waited.
And I waited.

An hour later, I took some more Tylenol.
And I waited. And waited. And waited.
And waited.

An hour after that, I said "f*ck it" and I took 3 Advil.

Yup. You read that correctly. I took some Advil.
And not a lil bit of Advil. I took 3 extra strength Advil.

It worked. My headache went from pounding agony down to tolerable ache. SUCCESS!!!!

Until I woke up this morning, back in agony.

So I took 2 Advil (at 6:30am). And then, I took another 2 at 12:30pm.

And then I took another 3 at 6pm.



Why am I telling you guys this? Well, I'm confessing my ITP sins.

The only thing keeping me from pure agony is Advil.

Tylenol is a joke. It's an evil red and white joke. I don't know who Tylenol works for, but it sure isn't me.

My platelet count has been on a roller coaster for the past couple of weeks. It just keeps bouncing between high 80s/low 90s and low 50s. On Monday it was 90.
Which is how I have justified my Advil consumption today.

Am I completely stupid?
Am I a terrible person? Do I have some sort of death wish?

*weeps* I just wanted the pain to go away.


Okay, that's all I had to say. I just needed to get that off of my chest. The first step to getting help is admitting that you have a problem.

Hi, my name is Kay. I'm an Advil Addict.

My kind of gal! Kay you make me smile!
Jeffrey

So I forgot to tell you... after my weekend Advil binge I went in for a CBC on Monday.

Platelet count: 83.

I would like to say that I was relieved and thankful that I dodged what could have been a dangerous bullet.
Instead, I reacted like a child.

Why do I even try anymore? I don't do ANYTHING and my platelet count decimates itself within hours. I spend a weekend taking platelet inhibiting drugs and nothing happens.

I'm done with the routine CBCs. I know that my hematologist cares about me and is concerned about my health. I also know that it frustrates her that without warning my counts will dip down and then resurface without me doing or changing anything.
But I can't keep living my life by numbers.

At the same time, I can't keep worrying about symptoms either. For some reason, I was completely symptom free after my counts took a nosedive earlier in the month but before Advil Addiction, after my counts rebounded to 90, I started bruising like crazy.

So this is my new game plan:
Ignore everything.

If I don't see petechiae or blood, then I don't care.

That is probably the least rational thing I have said since I was diagnosed but I am extremely frustrated this week... and I'm typing this at 2am. haha

Back on the topic of pain killers,

Tramadol works for most pain, but it doesn't work for my bad headaches or migraines.

I miss my post-op supply of Dilaudid. It didn't work exceptionally well, but it made me so happy that I didn't really mind it.

I hope you are all doing VERY well. High counts, low pain, all that jazz.
You're all in my thoughts and prayers!

Ignore everything. If I don't see petechiae or blood, then I don't care.


Kay:

I don't think that is irrational. I got to the same point and I think that in time, most people do. I think you can still be responsible and vigilant without being obsessive or consumed by it. I did the same thing, avoided NSAID's like the plague and any other thing that I thought would take counts down. They dropped anyway, so I stopped living my life like that. I was always so worried about having 'normal' counts that I bent my life around that. It didn't work anyway, so I stopped. If my counts were in the 30's and my hemo wanted a CBC weekly, I'd talk him into every other week or if I saw symptoms. Living with ITP got so much easier when I stopped worrying so much about the numbers. When I got to single digits, I dealt with it. If I'd been constantly in single digits, that would have been a different story, but I knew I could get counts up so I stopped worrying about it so much.

Ditto on 'not' stressing on the counts. Even though hema stated to come back in two months because count dropped...pushed it out to 3 months and stated would contact him if saw any bleeding or bruising. Finally taking control of the appointment schedule was more liberating than anything.

Kay, sorry tramadol doesn't work for you...where blocks the pain signal must not be able to make the disconnect from the one area of the brain to the other. Works for me because pain in abdomen and lower back.

Yes, Rob after a year of pain from undiagnosed abdominal nerve + back disc pain and being mentally messed up from the high dosage of prednisone, I would assume anyone's serotonin and norepinephrine might be deficient so I am very thankful there is something that I can function on without feeling loopy and doesn't bother the platelets.

And like Karen stated, it may not be that I was deficient, it may just be that brain is so less bothered by the pain elsewhere, I just feel better.

Kay!

That is how I deal with it! No symptoms no worry! Do what you want within reason and LIVE! :laugh:

Your Friend in Indiana!

Jeffrey

No symptoms no worry! Do what you want within reason and LIVE!

Yup....same here.
Once I learned to go by symptoms, counts ceased to be a scary big deal.

.