Hey, I know how you feel. I have Variegate Porphyria; I was diagnosed in 1997 at the Mayo Clinic. During healthy times, I tend to forget that I am sick and BAM! I get sick again. My attacks usually begin with anxiety and insomnia, but they both could both be from lots of things besides porphyria. Then the abdominal pain and constipation begin. If I don't address things by then, my hands and feet start to tingle and I get really nauseated. If I start to vomit it's off to the ER, a place I want to avoid. So when the abdominal pain starts I start drinking Gatorade and taking magnesium oxide 1000 mg (laxative), and extra dose of Neurontin (I take 800 mg 3 x day; 3200 mg is considered to be the maximum daily dosage), and if I'm having really bad anxiety, I take an extra dose of Xanax (0.5 mg); then I try to relax and drink as much Gatorade (sugar) and water as I can. Usually this routine will stop the attack. But I have learned to look everything up before I put it in or on my body. This includes Rx/OTC drugs, lotions, sunscreens (some have eucalyptus/eucalyptal in them; big no-no), cosmetics, food (no char-broiled meat), etc. It might help to keep a journal of some sort, so you can look back and see what was going on in your life just before the attack. Your experience sounds like the attack I had this past spring when I took a new Rx drug without looking it up.. My OB/GYN gave me nifedipine (which is on the UNSAFE drug list) and I took it, like an idiot; I paid dearly for it. Each time I thought the attack was over I would have another one. This went on for 2 months; I lost count at 8 attacks. I got so desperate I was eating a pint of ice cream at a time. I was able to stop the last attack by eating 2 pints of ice cream together. This is not recommended, because if you gain alot of weight and develop Type 2 Diabetes, and can't have Panhematin, you will be in quite a pickle. I am trying to lose 20 pounds but only through exercise, not by cutting calories. (I don't eat ice cream regularly!) I'm sorry you are going through this; I understand completely. You find out who your real friends are when you get sick, I'll be thinking about you. :)

Wow! Thanks for the reply :)

Your symptoms sound just like mine. It usually starts with insomnia, anxiety and constipation. I also get tingling in my hands and feet, but I’d describe it as burning. It definitely helps to put my feet in cold water!
It’s terrible to hear you’re going through this, although it’s oddly satisfying to know I’m not insane, if that makes sense!
Panhematin worked pretty well for me, but my province cheaped out and started supplying heme arginate instead, which gave me blood clots twice, so that isn’t a treatment option anymore.
At the moment, I’m going as holistic as possible while still staying on a high carb diet.
Is there a history of porphyria in your family? There isn’t in mine, but my mom took a swine flu vaccination in the 70’s when she was carrying me and I was diagnosed at birth as failure to thrive. So I’m thinking I acquired it through vaccine damage. Any idea where yours came from?

Cheers, nice to chat!

We think it came from my mother's side of the family; my grandmother had alot of "stomach" problems that sound like porphyria but she was never as sick as I got so was never diagnosed. My mother also has "stomach" problems but swears it came from my father's side of the family (ha), so who knows. No one wants to get tested; one of my brothers is a physician but I think he thinks I'm just mentally ill - which I was right before I was correctly diagnosed, but I think he thinks I'm just nuts. I have always had problems with insomnia and anxiety so when it happens I'm thinking, "surely this is something else and not porphyria" and sometimes it is, sometimes it isn't. Before I got sick I was studying medicine but was unable to continue due to the health problems I was experiencing. I understand your lament that you feel that you are no use to society, but that's not true. Even if you just interact with one person each day and it's positive you have done something good for them as well as yourself. When I go grocery shopping (or anywhere else) I try to smile and say hello to everyone I come in contact with. This is positive for them (it might be the only nice thing that happened to them that day) and for me (studies have shown the physical act of smiling helps to raise the levels of positive neurotransmitters in the brain). I also take antidepressants (Celexa) and try to spend time with my friends, even if it is on the phone, by text, or email. I talk to my cats and dogs but human interaction is important. I also try to laugh about something every day (cat and dog videos online; a funny website is Dump a Day - dumpaday.com). I think going as holistic as possible is a great idea. Keep your chin up! When I'm feeling sorry for myself I have to remind myself that things could always be worse.

Hey, the other thing I thought about was the meds I have been on for neuropathic pain. The first pain specialist I was referred to (in 1998) started me off on OxyContin and Neurontin. After a few years, my insurance stopped paying for OxyContin and any other time-release opioids so I was switched to methadone. It worked fine but after years of being on it and oxycodone (immediate-release) I developed what is called hyperalgesia, which is increased pain from the pain killers! I was in so much pain I could hardly walk and was back to using a cane to get around. About that time, my original pain doc decided to retire, which meant I had to find someone new. That was a nightmare; I was naive, I guess - I had no idea how long it would take to get in with someone else (especially with the "opioid epidemic" in the news almost every day). I had to detox off methadone at home - which was a nightmare, to put it mildly. The withdrawal symptoms were awful and the physical pain was nearly unbearable. I honestly thought about suicide every day. I finally got in with a pain specialist who had been in with my old pain doc but had gone out on his own years before, and I am so grateful because under his care I am in SO much better shape, mentally and physically. I now take Norco (hydrocodone/acetominophen) and Neurontin, as well as the antidepressants and Xanax. I'm telling you this because you wrote that you are taking a pretty high dose of morphine; it might be worth considering changing to oxycodone or hydrocodone if the morphine is keeping you pretty sedated. When I was taking methadone I slept 12-14 hours a day, and now I sleep 7-9 hours at night. I also noticed you didn't write anything about meds for neurological pain (like Neurontin, which is gabapentin; or Lyrica, which is pregabalin). I honestly could not tell the Neurontin was helping me at all - until the day I ran out and forgot to get it refilled. It was on a weekend and the pharmacy was closed; I spent the rest of the weekend in agony, even with narcotic painkillers. So after that experience I make sure I plan in advance about refilling my meds. Alot of what I have written about may sound like I have this porphyria thing figured out, but it's taken me many, many years to get to this point in my life. And just when I think everything is fine, it seems as if porphyria throws me a curve ball. But overall, things are so much better than they used to be, and I truly hope you can get to that point too. I try to stay on a (semi) regular schedule, eat a good diet, don't drink alcohol, research every substance I put in (or on) my body, try to get some regular exercise, drink alot of water daily, have some contact with other humans every day, do things that make me happy (listening to music, reading, laughing with my mother and friends), spend time with my cats and dogs, go to my regular medical check-ups, take my medications, and listen to what my body is trying to tell me. If suddenly I start craving sweets, I eat something sweet. If I am craving salt, I eat something salty. Sometimes I just have to go lie down and rest. Even after 21 years of knowing I have porphyria there is still much to learn. I have learned alot from medical books and information on the internet, but I have also learned a great deal from the American Porphyria Foundation website, by reading the quarterly newsletters and reading/watching APF member stories. Also, other porphyria groups around the world (United Kingdom, Europe, South Africa, etc.) have been helpful with information on their websites. It's a rare disease, but somebody has it! It's a pain to have it (literally!) but it's just something we have to deal with. Write back if you have any questions - I'll try to answer them. Hope you are feeling better these days!

What I forgot to mention is the pain in my feet - it feels like someone is pouring really, really hot water on them; awful burning pain. So I understand why you'd put your feet in cool water. I will try that next time that happens to me.

hi folks, just checking in. the experience you are sharing seem to follow along with my own experience. I've been diagnosed since '91. finding the right meds to help manage the ailment takes years, and just when you think you've got it something goes wrong. even the docs have head scratching moments. I am not giving medical advice, but just sharing what is working for me right now. to manage the acute episodes my hematologist performs phlebotomies as needed.(treating it similar to hemachromatosis.) the neurontin,,dilantin,and muscle relaxers became problematic. they caused extreme anxiety and tia's. so now I use dilaudid for the pain,(the gut pain is rough.) and marinol for the neuropathy and muscle spasms. so if you live in a medical marijuana state it might be worth looking into. upside to the marinol is that i have cut way back on the dilaudid with no ill effect. also quells the anxiety considerably. acceptance is a big factor! do what you can when you can and don't beat your self up when you can't. eat lots of pasta and carry on.

Mississippigirl:
I’ve had the same type of journey trying to find suitable pain killers. I have tried multiple rx’s for nerve pain, including gabapentin, but nothing has worked but morphine. I tried OxyContin, oxycodone, and was offered fentanyl (because I was so conditioned to morphine at the time) but straight morphine is the only thing I could handle. Ony was horrendous. Yes, absolutely the dose of painkillers looks high- that’s just the range for really bad days. For the past 6mo I’ve been averaging closer to just 30mg per day, once at bedtime. I also had to titrate off abalone at home, it was as rough as you said, absolutely.
All of 2015-2016 was spent recovering from a flare that left me using a cane (at 38) and two episodes of blood clots. That’s when the meds really took off. From anti psychotics to anti depressants and everything in between. It was nuts. I don’t know how I lived through it. I put on 50lbs and was sleeping just like you- 12-18hrs per day. About August of 2017 was when I was finally ready to start coming off everything.
So I lost all the weight (back to 170!) came off 90% of the pills and started testosterone treatment. Which is what prompted my very first post, actually, because I still feel as awful as before LOL

Squidbilly:
Hi thanks for checking in!
I also have incredible gut and nerve pain. Morphine was the only thing that’s ever worked for the gut pain, and, like you perhaps, I found that marijuana really helps with nerve pain. Also with lack of appetite and sleep. I prefer eating concentrates to anything else.
Phlebotomy, eh? Haven’t ever had that offered! Of course I can’t stand needles or blood so that’d never happen! Lol
Have you ever tried heme arginate or panhematin?

Orion77: I understand completely! I thought about marijuana (CBD oil) but I get drug-tested by my pain doc and so far he is against any form of marijuana; I've never had a "dirty" drug screen and I want to keep it that way. Actually, 30 mg of morphine a day is not that high a dose, and if that's what works, I say go with it. If it ain't broke, don't fix it, right? After everything I've been through in the past I am actually surprised hydrocodone works for my nerve pain, but it does. Some days are worse than others, so I titrate my dose up and down, depending on the "pain of the day." Sounds like an entree on a restaurant menu. Lol

It’s incredible that thc is considered dirty. It’s a crime, really. If you’re interested, look into Rick Simpson Oil (Phoenix tears). That’s what’s working for me... Rick became quite famous as yet another person to find a cure for cancer (his oil). It’s just concentrated thc oil, and it’s just incredible. No hangovers, no dependency, no tolerance build up. Highly recommended (pun intended!) you try thc if you ever get the chance.
That being said, we’re all so different, it doesn’t seem like there’s any one answer for those of us with porphyria. I’m hoping to be off pain meds completely by September, but we’ll see. The funny thing is that overall, the pain levels are about the same. So I figure if I’m going to be in pain I might as well be as clean as possible. I can’t do another 40yrs on this regimen lol

i have had panhematin several times. especially in the early years.works fine, but does create the clotting issue. So we save it for those life threatening events. I was on slow release morphine and phentanyl patches in the early days and years. was glad I was able to move away from them as we found a working management regime.
The biggest thing is having a medical practicioner that will help manage the acute episodes. We all react differently to medications, just have to take time to find the right mix.

The last time I went to see my pain doc he mentioned cutting my pain meds dosage; when I said I didn't think it was a good idea (because I'm doing so well right now) he replied, "well, you don't want to be taking narcotics for the rest of your life, do you?" and I thought, I'm going to be on the rest of my meds for the rest of my life, most likely, so what's the difference? I think he had to bring it up because of the "opioid epidemic"/ the new CDC guidelines about prescribing narcotics for non-malignant pain. I would LOVE to be on NO medication, but that is not an option for me, as I can't function. I'm lucky to have a great internist who knows about porphyria; I just got in with him last month. So if I have an attack that I can't manage at home I'll have someone knowledgeble to take care of me.

Mississippigirl
Yeah I’m struggling with that issue right now. I was offered fentanyl once I hit about 300mg of slow release morphine per day. I turned that down and focussed on minimizing the dose. That was 3yrs ago now. So I went from about 300mg to 30mg per day, which has been fantastic. I tend to agree though, I still can’t see how I would be completely med-free. There’s just too much pain, as you well know.

Porphyria pain is unlike anything I’ve ever experienced. It’s not compatible with life, in my estimation. And there’s just no sense in putting yourself through a lifetime of pain just because of a stigma and careless doctors. If I can’t stop having attacks there’s no way I’ll be completely med free. But that’s the battle, eh? Ensuring that we can both take care of our symptoms while also being able to live a full and happy life.

Squidbilly:
Panhematin worked for me too, but my hospital cheaped out and switched to heme arginate, which is what gave me the clots. I can’t get panhematin anymore because of this switch. Since heme arginate clotted me both times I took it, I don’t consider it an option anymore.
I totally agree about finding the right doctors. The right one saved my life, and the wrong ones nearly killed me. Im so grateful to finally have a sound medical team.

One thing about Panhematin - the American Porphyria foundation website has a link about affording the cost/co-pay. So that might be worth looking into.